OMG I feel this! I have read more medical journal articles since the onset of my condition than I did when I completed a Master's degree. It also takes a lot of energy to watch all the words you do so you don't offend a doctor by knowing your body and what is happening to you.
For me, the sneaky buzzword tactic works the best. Especially when I don't use the medical terms, e.g., I will say "I get dizzy and it feels like I am losing balance" instead of saying "I have vertigo". Sadly in my experience playing naive and being surprised when a doctor suggests it might be something serious works out the best. The few times I went in and asked "could it be x" I always got dismissed.
Same, I did that with my covid symptoms and I did that with my migraines when I went to my neurologists. I got a new neurologists recently and I was pleasantly surprised when she suggested extra testing and asked me if I WANTED any stronger meds. This is the this approach in my opinion. I have also noticed that starting with the most sever and common symptoms is the best. When it comes to covid I said that I live with someone who has it diagnosed and that I have trouble with breathing which I described exactly how I found it described online. 2 days later I got a positive covid test. I did the exact same thing with the migraine. A year (of trying different meds) later I finally got to experience quite a normal life. Nowadays I have a constant headache and I get migraines every once in about 2 weeks. The headache is nothing compared to what it was before. I almost don't walk into walls anymore. The migraines are way less severe as well. I don't remember the last time I had to walk to the bathroom blindly with vertigo and coloured spots obstructing my vision.
This is so true! Works the best for me also. Sadly, if I play it off like its not serious then the doctor takes it very serious. We have to hide our knowledge!! Sad but true!
Imagine being a Dr knowing you have an illness and no one gives a damn because their arrogance gets in the way of them treating you. Ive seen doctors bring their kids in for sick visits and the dr will dead up dismiss them because how dare you tell me my job civilian ugh.
8:19 I've done this EXACT thing multiple times. I've done my research, come to my own conclusions, and then looked SPECIFICALLY at the red flag symptoms associated with that disease/disorder/etc. and noted which ones were applicable to me, then ONLY mentioned the symptoms during the appointment. I went from being "overzealous" and "letting my anxiety trick me" to being a "classic case" of a disorder. It's SO annoying how we have to prep and strategize before going to a doctor!!!
HI FRENS! Migraine Jen did some editing that I wasn't able to go back to correct before posting (LOLOL). So, especially if you're here within the first few hours, you may notice some editing errors. Some of them have already been fixed on my end, but the changes are still processing on RUclips. I decided to go ahead and post anyway so you can start watching in the meantime. 💜😘 (If it's been a few hours and there are other super obvious problems or big pauses, please feel free to let me know!)
Is 2 hours long enough to be considered a few hours? There is one small error at 25:41, just a take that needs to be cut, but the rest of it is all good. Thank you so much for making this video!
I was in pain for 7 years before I had more severe health problems. I was told I had too many issues and to pick the worst. I visited many doctors and large city hospitals before I finally found a doctor that listened at my local emergency room and called a surgeon for his thoughts. I am now 2 years later without pain after surgery and on medicines for my other issues. I thank God every day for these 2 that listened and helped me.
@@penultimateh766 you need to make that statement as another comment not a reply to someone other than @Momming With Migraine. She would have to go through every comment and reply to see your comment. Just a suggestion.
@@penultimateh766 I'm concerned if it was me but I'm not worried about Jen's baby. There's many things that Jen doesn't share with her subs so I'm very optimistic that she has it under control. She's dealt with her condition for years and knows what she has to do. Have some faith friend.
I'm a plan b girl - I deliberately spoonfed my doctor all the classic symptoms of what I knew I had. And finally after 10 years of frustrating appointments and increasing symptoms my doctor confirmed my self diagnosis. I have post viral caused hyperadrenergic pots.
I was taught by my dad to pretend you're clueless in any situation where you're asking for help. He wasn't talking about a doctor's office but as a man he doesn't experience being not taken seriously in doctors offices (but he has experienced not being taken seriously in professional situations that stuck with him). In a doctor's office I usually start out letting them explain things to me like I don't understand bc it makes them feel in control and try to be strategic about getting to the points that are most important to me. Once we've developted a relationship I might let it show that I know what I'm talking about.
This depends on the doctor. When my doctor talks to me he puts things in very simple terms but I will respond with a question using the medical terminology and he get more comfortable and talks to me like a doctor. (which is sometimes too much but I can still ask for clarification) But I have been to many many more who would write you off for knowing anything or being at all prepared for the visit. So for the most part yeah unfortunately this is the right approach.
This is so detailed, and SO vital. I know SO many people who needed to hear this as they navigated the medical system, and continue to need it now. Thank you, thank you, THANK YOU for putting your spoons into creating something as thoughtful, helpful, and in-depth as this. I'll be sharing it next time someone in my Zebra chat for EDSers is heading into a doctor's office for a new comorbidity diagnosis.
The phrase I found useful is “does lt seem to be reasonable “ ( fill in the blank). I was a medical professional before retirement an I found communication with anyone I worked with easier using that phrase. Thanks for helping people to understand chronic illness and how we feel. You are the best. Will you ever let us know the baby’s name?
I have totally done the "I think I know works wrong with me and what I need" thing with multiple doctors. I find different doctors take it way differently. I was completely dismissed by one Dr but a month later found another doctor at a major teaching hospital who worked off my bunch and 2 months later I got diagnosed with with an extremely fare condition. ADVOCATE FOR YOURSELF.
I've used both sides of the "battle". Using key words and leading doctors to a diagnosis/test is probably more effective because the doctor thinks they are doing their job. The only problem with this method is that it is only effective if the doctor is knowledgeable on the subject. The hardest thing is often to convince your family doctor/GP to do a test or refer you to a specialist on things that they have little knowledge about. That is where doing your research and providing good quality references etc can come in handy, I like to use uptodate since it is what many doctors use for research/reference.
Lmao I died at "Hey honey!" 😂 😂 Thank you for sharing. Medical anthropology literally studies all of that. It's frustrating for so many. The system is broken. I preach what you said!
I agree with what you are saying Jen. I think we need to speak up, but always in a polite and kind way (if possible). I have had a bit of inaccurate information put in my charts over the years, simply because some Drs have been dismissive, disinterested and impatient. Fortunately, this doesn’t happen too often. Some Drs do roll their eyes back, but usually the rude ones will make light of your symptoms. I have had incorrect information put in my hospital chart when I have been seen by a ‘fill in’ Dr instead of my usual consultant. I even had a junior Dr laugh about one of my symptoms simply because he didn’t know enough about my rare disease to take the symptom seriously! So, I ended up going to see my regular GP to get an anti inflammatory puffer to help me breathe a little easier. I have another appointment with this specialist Dr today and I am going to tell him about the way his junior Dr made light of a very important symptom, and how dismissive he was. He should have admitted that he wasn’t knowledgeable about rare autoimmune diseases. If only some of these doctors realised how their words and/or inactions can hurt a vulnerable, disabled, sick patient. 😢🥺 I am glad I had my husband with me but he was a bit shocked and confused so didn’t speak up either. I always think about what I should have said after the appointment, when it’s too late. 🙁 I usually deal with it by telling myself that maybe the Dr was having a bad day. I wonder though, does the offending Dr ever stop to think that a disabled person may have ‘a bad day’ everyday? 🤔
I ended up self diagnosing myself correctly, and glad I brought it up but in a light "oh I read some research to be able to communicate how I felt better." It was something super rare so it was put on the back burner, but when things started to get worse my doctor thankfully remembered me bringing it up and didn't take long for him to start testing for it and bam! It was that exact thing I had read a personal testimonial from a patient. I have to say I am thankful for a doctor who listened and he even said that if Doctors actually just listened sometimes they would get places faster with their clients. Granted this was something that was progressing fast and was quite life threatening so the urgency certainly sped things along.
I took notes of my symptoms to my last Rhuematogy appointment. Dr was wonderful, he didn't have answers for me, but wasn't dismissive. He said "wow, you're a tough one aren't you?!" And said he would need to look into it and get back to me next appointment.
Thank you for this! I've also had my fair share of doctors, psychiatrists and psychologists be really dismissive with me. I've been trying to get diagnosed with persistent depressive disorder (also known as chronic depression) for a while now, and every time they tell me that my situation is temporary and diagnose me with major depression, and throw random medication at me. They don't listen when I tell them it's a milder, but chronic version of depression. Next time I go in I'll definitely try to politely ask my doctor questions like "what's the difference between this and that" or "why do you think I have this and not that".
I research and always prepare for doctor appointments. I am a retired medical transcriptionist. I can usually speak the lingo. It is extremely frustrating to say this, but I have found that when seeing a male dr, it is often beneficial to have my husband with me. Even if my husband does not participate in the conversation, I feel like I am taken more seriously when he is there. This is so damn frustrating! I have fibromyalgia so I have seen a lot of doctors for that and other medical issues. My tactic is usually on the first visit to sort of “play dumb.” I might use the buzzwords that I have learned from my research, or to just better explain my symptoms. If I find this doctor someone who is willing to work with me, at later visits I might guide them towards my research. Thank you, Jen, this post was very helpful.
Doctor with a Superiority Complex: buzz words. The doctor who wants to figure out how to treat your symptoms: detailed. Got a new PCP recently. Came in with a list of meds I'm currently on. Mentioned past history of tests and results in regards to symptoms I'm experiencing. She now knows what I've been dealing with, what has been checked, and what paths I can see now. I'm autoimmune, so describing the symptoms for "I know this is part of xxxxx, but this is new" is pretty much every appointment for me.
It took me almost 10 years to be diagnosed with narcolepsy... it wasn't something I thought I had because I was used to the melodramatic portrayal on TV, but knew something was wrong and it wasn't normal to be in my early 20s and to constantly feel exhausted (so matter how much I slept). Every doctor just automatically went to "young female, must be depression". I do suffer from depression, but that means I know what I feel like when I am depressed and this wasn't it. GP (general practitioner) also wouldn't refer me to a sleep clinic, because usually people are being tested for sleep apnea, and I was told: "you can't have that, you aren't overweight" (which is just flat out wrong). Finally it was my dentist that got me referred to an ENT because I was also getting chronic tonsilitus and he would always notice it. From the ENT I eventually got a referral to a sleep specialist, but it still then took over a year to get a diagnosis.
"You can't have [sleep apnea], you aren't overweight" - huge load of bull! I had it when I was a baby, and it kept me from GAINING weight, and now I've got it again almost 30 years later (though thankfully only mildly), and it causes my O2 to drop extremely low while I'm asleep.
I think you should go to your Dr. Appointment and be sneaky. Start out slow and tell them your symptoms so they don't dismiss you. I've been through a lot of appointments, I've always brought someone with me, because I have trouble remembering things. I really hope you find a Doctor to figure out exactly what is wrong. I'm praying for you.
That's the passive aggressive I'm talking about tell them the symptoms let them connect the dots, and if they don't then present research and tell them what you want to have happen from there. Bravo!!
Definitely NEVER mention that you read something on Internet. I once said "I read on Internet that I should consult it with a doctor". He rolled his eyes saying "Ah, Internet..." and from that point, he tried to get rid of me, not really answering any of my questions.
I would say rather never stay with a doctor that rolls his eyes on you when you tell him you tried to educate and help yourself. I am so sorry you've been through this. Some doctor shouldn't be allowed to see patients 😥
@@kikitauer thanks, that was the last time I saw the guy. But to be fair, in last 6 years I had only one (!) really good, helpful and informative encounter with a doctor. All other GPs at my doctors surgery are either dismissive, or simply crazy (feeding you some irrelevant information e.g. connection between pollution in Manchester area and population of white moths; or comments like your back hurts, because it happens sometimes; or even quite dangerous advice: you can have a pint with your Paracetamol, because it'll help relax your muscles - and kill my liver as well, thank you very much!). All that time I thought that I'm just very unlucky with doctors, but videos like this one not only prove that this is a worldwide problem but also give me courage to stand up for my rights. Thanks so much Kiki and Jen(s).
I'm sorry, but the irony of this is hillarious. You're litteraly telling him that the internet told you to see him. If he managed to become dismissive from that, he probably wouldn't have been helpful regardless of whether you mentioned the internet or not.
@@alienorfrei6867 I know, right?! It's like the moment he heard the word "Internet" his brain shut off the hearing system! Funny enough, that was NHS website I was referring to haha :)
The first time I saw my neurologist (hard to say he's still mine because I've only seen him twice and the last time was almost 2 1/2 years ago), I told him I was suspecting that X was going on, and that the reason I suspected was because I had seen a video detailing the symptoms and official diagnostic criteria for X and what I was experiencing seemed to be somewhat similar. He seemed at the appointment to want to hear and understand everything I had to say (to the point of even asking if he could make a copy of my notes, which I gladly let him do), but later, once I got the records with the chart notes from that appointment, he had written that I had said I thought I had X because I had watched a youtube video of someone who had X, and I was like, "um, NO! That's NOT what I said!" I haven't seen him since I got those records, and I very well might never go to him again.
Thank you. I was at a doctor's office, I felt I could barely breathe, I could barely sit up and the DR says to me, well, you're breathing fine and you look good, so that's good. I was like what are you talking about. Later when I mentioned it to the nurse she said, "you wouldn't know" you look strong. And yeah like you, well that's cause I managed to take a bath for you. You're Welcome! I'm fighting my doctors right now. 2 years suffering. Also had doctor's write things in my chart that weren't true and didn't happen but I didn't know what to do about it. Still don't, I Guess. This is helpful. Thanks again 🦋
In a time were we now have the option of emailing our doctors I would certainly suggest using that to your advantage. The spoken word can be forgotten or retracted but an email with direct instructions/advice from a doctor can be printed/forwarded and used to move other medical professionals in a positive direction .
REMEMBER THE DOCTOR WORKS FOR YOU! TW: my nephew would be dead if my sister didn't decide to get a second opinion after feeling like she was being brushed off, and as the mother of an 8y/o with a rare form of brain cancer, that wasn't acceptable to her and she felt she gave them siffience opportunities to fix it. My son was in the NICU for a little while after birth. He came home for almost 2 wks and was doing really well. Then after an appt they said they were going to have to readmit him to the NICU because of his weight. Before they mentioned NICU I told them it was probably a mis-weigh. And when I left the appt they sent me for a blood test and told me if that was good he didn't need to go to the NICU and to just come to my appt the following day. When they called to say his blood test was good but they needed to reqdmit I lost my mind. It was made worse by the neonatalogist wanting to readmit him is a doctor that I didnt trust after our expierence. Thankfully my husband is good at getting me to get a grip. Im the one home with the kids so he asked me if I felt he was doing good. I said yes, obviously. He said okay then, how do we get another doctor involved. So when they called in the morning about getting him flu and COVID tested I said I wasnt bringing him in right away and explained why, but said we would be going to our appt that day and hopefully get in with another doctor. The NICU dr called we talked and she said she was okay with him not being admitted as long as he was back up to his birth weight within 6days. I agree. We go to his appt and they weight him, and what do you know hes above his birth weight. And they really tried to tell me this 1 month old went from 6lbs 4oz to 7lbs .5oz in 24hrs. They wouldn't accept that the day prior was inaccurate like I had said. Then they say great, no NICU come back the next day to make sure he's still gaining. So we go and hes gained 1oz. Awesome right. No now they wanna readmit again. Then use his blood test from 2 days prior to him needing to be admitted even though she said they were good the day before, and then she does CRT on him and uses that as a reason he needs to go. I point out hes been naked in an air conditioned room and was obviously cold. She said him being cold had no effect on the test, but she had just said the opposite 2 days prior. I didnt argue though. I just said I wasnt comfortable having him readmitted as it seemed unnecessary. Him and I were doing all the right things and he seemed to be doing well. The dr realized I wasnt gonna give and scheduled me an appt with a different dr the following morning as she wouldn't be there to check on him. I also had a telehealth appt with a geneticist that morning for baby. This new dr said his weight gain is good and asked if I had any questions and I started crying saying I didnt want him to go back to the NICU and this dr said she talked to my sons dr and doesnt understand why they're even considering as he hasn't lost weight once since leaving NICU, and is above his birth weight. She spent a lot of time with me that morning going over different things I had questions on, going over the telehealth appt, ordering tests, etc. That doctor has become a huge advocate for myself and my son even though she didnt become his primary dr for another 3wks. When my son was officially diagnosed as being in kidney failure she called me and left a long voice-mail with a pep talk for my husband and I and gave me her personal cell phone number to call if I need anything. All because, with the help of my husband, I spoke up. Im someone who will permanently be effected be a drs mistakes who would be in a much better position had i just said something when i was uncomfortable with something.
I don’t have an undiagnosed condition, but last month I had a televisit with a new doctor. He didn’t have any of my labs for some reason so I had to relay everything to him. Awhile later he asked what my occupation was. I’m an engineer with a biomedical background, and he said that made sense based on how we were corresponding. I felt like treated me like I was more knowledgeable after that, though I could’ve imagined it.
I have dealt with dr's an excessive amount all my life and I'm only now understanding how to advocate because until now my mom has done it for me. I'm glad you're using your platform to do this because a lot of people haven't gotten to talk to Doctors all their lives so they need to know now. Thankyou. ❤️
When I went to the ER I was in crisis mode with no diagnosis but my best friend who is in school to become a PA said my symptoms sounded like vestibular migraine. So when I went to the ER I kept saying, "dizziness, nausea, migraine feeling, pain in neck." At the end I got my VM diagnosis without even mentioning it. I think it also helped that my daughter was there with me in her scrubs. When I went back 2 days later because things were worse I was alone and did,t even get fluids.
i mostly go the route of not mentioning things directly. for example, instead of telling my psychiatrist what i thought i had (borderline personality disorder) i mentioned that i was diagnosed with depression years before but i didn't think it fit all of my symptoms. and then she said she didn't think i had depression, and asked if i ever heard of bpd, and told me to look it up and see if i related to the symptoms. i found out i was right and i didn't make things uncomfortable.
i was diagnosed with depression, bpd, and bipolar right from the start, and i brought up that it did not fit all of my symptoms specifically anxiety. well of course i was dismissed as oh that is just a part of or symptom of the bipolar. seemed like #1 they wanted to just put me in a box and label it bipolar and that was the cause of all my issues #2 they just wanted to treat that and do as little as possible for me. It wasn't until i got a 2nd opinion and started seeing a different doctor that it is was confirmed i have generalized anxiety disorder as well as social anxiety disorder. Which has just as a significant impact on my life as bipolar does
@@miahdavis8331 that's awful. a lot of doctors are shit and completely dismissive. i'm happy you could change doctors and found one that listened to you and took you seriously.
I do the research but don't say anything about it. The information is there to help me make decisions about my care. I introduce my husband right away and explain that he is at the appointment because he witnesses most of migraines and they effect my memory, he can help share information about what happens during an attack that i don't remember. Then the dr normally just includes him in the conversation because the situation is defused before it starts.
I went into several appointments looking for my EDS diagnosis and thankfully the doctor was honest and said he didn’t know much about EDS and they referred me to a very well versed genetic doctor I wanted to see. He was the one is officially diagnosed me. My primary doctor is fantastic as well. She is willing to refer me to anyone I feel I need to see which is helpful because I have a friend who tells me the best doctors to see for EDS.
I missed your live again!!!! 🥺🥺🥺 I got so used to hiding my pain or reference behavior towards pain, that I now have a really hard time forgetting to drop the act that I'm ok when I'm not. I have an incredibly open Dr and I literally know that I don't have to pretend that I'm ok when not. I do believe that if you listen to the Dr for a few minutes, he/she will tell you how and what they're intention of how to treat you by their own personal beliefs and how they interact with you. If you go in as educated as you can be, and the Dr is trying to push (and I mean REALLY PUSHING) what they are willing to do for you, it gives you the option to either continue your exchange with them or to make a choice to speak up. If they're dismissive, you know where you stand and what treatment they're going to do for you. I've literally had a pain clinic Dr tell me to "read a book called "Unlearn Your Pain". That was his best advice!!! It all stemmed from him reading my referral to the clinic and only choosing to see the word fibromyalgia and IGNORE the fact that I spent literally 2 years having nerve ablations throughout my entire spine with some success and that I have been diagnosed with osteoarthritis in my whole spine, stenosis and sciatica. I ,at that point, had been dismissed by so many Drs that I completely lost it. He was rude, unempathetic and spent not longer than 10 minutes of his time with me. @Momming with a Migraine, I agree that you need to take time out from excessive Dr appts. The 2 years that I spent having nerve ablations was entirely too much for me and I HAD to stop for a while. I didn't recover as quickly as I was told I would after each ablation and spent a week in too much pain. I thought since I had such a great Dr doing the ablations that I had to continue. After 2 years, I really couldn't find the strength to continue to do that to myself. I'm apparently having a Migraine Jen moment here and just rambling on. I do hope that someone else will get my point. Peace and blessings to you all. 🙏💖
I really like the using the buzzword suggestion. Often it seems like doctors don’t necessarily agree with you unless it was their idea first. Sad but true. You look great in that shirt by the way! Thanks so much for sharing this advice. You are awesome! Love this channel. 💜
Love today’s sign off! Props for keeping it in. 🙃 SO much great information in this video. And your objectivity WITHOUT apology is refreshing. You both acknowledge humanity, respect, self-advocacy, differing POVs and experiences, situational differences; all without compromising yourself and what you know about you! And you don’t let uneducated comments sway you. I don’t care how many degrees a doc has on the wall, they have never lived a day in your body. And when chronic symptoms are unpredictable, they damn sure go into hiding the day you have an appointment! 🤬 As you said, you just want to feel better. You’re not bored with excess time on your hands (and 💰in your pocket!) to wait months for an appointment, jumps through hoops to GET the damn appointment, then go to the appointment just to be an obnoxious hypochondriac and challenge the doctor! Okay, sure. If you went in with completely unrelated research and symptoms to what your appointment was for, I’d say your pushing the envelope. But for f*cksake, it’s not like you were med seeking!!!! You’d think they want to order all sorts of tests to get paid! (okay, now my emotional level is getting in the way.) Learning to live with and manage a condition you know to be real for you is one thing. But any chance at something different that’s treatable? Something that could give you your life back?!?! WTF?! Of course you’re going to pursue it. I love your view on the doctor-patient relationship - they ABSOLUTELY work for you! And of course you have respect for them or you wouldn’t have sought their help. But that in no way implies they are always right and you are trying to work the system! Especially in this particular scenario! What on earth are you gaining by actually having a leak?! I’m obviously too worked up and will stop ranting now. But you are doing the world a favor with your videos, and you’re making a difference. I hope that is a tiny consolation. (Although, I’d selfishly prefer to feel better.😉). 💗💗💗
I've tried so many different approaches with doctors. I hate the "dance" we have to do to be heard. I'm a healthcare professional (or at least I was until I had to stop working because of chronic illness) so I know how to navigate the information and the "system." But... I've had horrible experiences (cue the medical PTSD), useless appointments and a few good experiences. It's frustrating to have to essentially, dumb down what we know about our symptoms to not appear too educated, so we don't inadvertently offend the doctor. After a recent visit to a very well-known medical center (out of state, mind you), I came home completely depleted and drained from the experience, swearing that I was done with doctors and that I'll just pretend I'm fine and go on with my life. That plan didn't work lol. I wish they understood the amount of energy that goes into preparing for an appointment and the toll it takes on our physical and emotional health. I've definitely used the buzzword tactic with some success. I can't tell you how many times I've heard, "yours is a complicated case" - that usually means they're not going to help me. I'm a much better advocate for other people than I am for myself, unfortunately. All in all, I try to stay positive and keep my faith! Thank you for this channel - I'm so glad I found it. :)
Depends on the Doctor. My regular Doctor just goes with what I say. If I say, "I think I'd be better using 'this' med for 'this' problem", then she writes me a prescription. When I come in prepared, did my research, know what I think it is and what it takes to fix, she loves that I did her legwork for her and goes with it. But, I've DEFINITELY run into the other kind, that are extremely condescending and say something like, "your couple of hours of Googling does not match my years of schooling and experience." And proceed to ignore you.
I love this advice. It’s good to see the different tactics because there is no single tactic that will work with everyone. Your sign off was hilarious.
Thank you this was awesome! I have an appointment this week, perfect timing. I personally like to go with doing a lot of research and use the right terms but in your own words, careful not to self diagnose because I’ve found doctors don’t handle that well. I agree with definitely advocating for how your symptoms affect your life. Never give up!
I've had both reactions from doctors. Where I come in being like hey I've done some research and this is some of the stuff that makes sense. I try to be in the middle of knowing to much vs to little. But even being some what informed makes doctors often dismissive to the point where doctors have taken a diagnosis I already have and disregarding it. Taking the information I know about my diagnosed condition and saying becuase of this,this is what makes sense to me. They turn around and go,but you also have this problom so that can't be right! Completely disregarding my diagnosed conditions. Simplely becuase I came in informed about my condition. Well as I've also had doctors that get rilly exsited when I say I've done research. It depends on the doctor. Genrealy you should wait intill you met the doctor and then decide what to do. But if it makes you more comfterble the most I between you can get is by telling the doctor "hey I've done research,but before I say any of my thoughts on it I want to hear what you think first" it makes it seem like your genuinely trying to get their opinion,not seeming overly confident,and still giving off the idea that you not gunna put up with anwsers that dont make sense.
I love your advice and have had experience with dismissive doctors, but being in the U K it doesn't seem to work the same as in USA if you can't get past GP you are stuck unless you have private health insurance and even then you sometimes need GP to refer you. We don't have a way to get to the doctors we want to see if the GP doesn't refer us, we can ask to see a rheumatologist, neurologist or any other kind of specialist but if GP doesn't think we need it we are not referred, love NHS great medical system but can be frustrating for long term illness. I have Rheumatoid arthritis and fibromyalgia, was sent to a pain clinic where the medical professionals who where supposed to help us, because it was a group session, came across as it's all in the head, I challenged them with a rather derogatory saying "it's mind over matter" she agreed but I hadn't finished I responded with " yes if you don't it doesn't matter" many of the others there for many different chronic pain conditions agreed with my sentiments needless to say I did not go back to the clinic but I was not the only one. I have since attended a similar where the outcome was much more positive and helpful I have learnt that my condition will never improve but how to manage my symptoms not that that is easy fail quite a lot. Hidden disability is hard to deal with I always feel as if I am doubted and suspected of falsifying my symptom's I also do the smile, agree, hide how bad I am and say as little as possibles about my symptom's.
Bless you for this video. You are amazing. I know that right now you're probably crashed on the sofa or the bed. Trust me, I know what you're going through with the spoons. Until next time, toodle-oo 💜
The best advice I was ever given about Dr's and their attitudes is remember this " Dr's are In a medical practice, which means they are practicing medicine". They are human and most are trained to get a feel for what you have in about ten to fifteen minutes. That's regardless of how long you are examined and speak. Pay close attention to facial expressions and body language when you are giving your issues. I have asked the receptionist when making appointment if doctor prefers a detailed full history or seems to focus on the worst symptoms.
I love the points you made. Back in 2016 I took a massive fall where my hip swelled up and had the worst bruise I feel is humanly possible. The ambulance wanted to transport me to hospital but I couldn't afford it so I said no. Two days later and no more pain so I assumed everything was ok. However instead of swelling going down, I got what is now a permanent lump on my hip. I had no family doctor at the time and the walk in clinic wouldn't run tests because they didn't have my chart. I got a family doctor sometime in 2019 and mentioned my hip at the initial visit. Despite it being years she was firm on saying it will go away over time. The pain in it is now unbearable so I brought it up again this past January and am now finally getting an ultrasound to look at it. I'm very overweight so I don't know if the ultrasound will show anything or if it is even the right test to solve this mystery but at least now she is trying. I've been pushing to get her to look at other issues too but those are still works in progress.
You really have to consider yourself part of your "medical team" and see yourself as an equal player. If doctors do not fully include you in discussions or decisions, you deserve better. That can come with trauma. I once brought my service dog to an appointment and was denied access not only to my appointment, but the whole office/practice with the excuse "your doctor has a dog allergy." After having a medical episode in the hallway I never went back; it feels like a situation where I couldn't make a difference and barely took care of myself.
I has a fantastic meeting with my neurosurgeon yesterday, some because of this video, but mostly because he’s awesome And told me that I was asking all the right questions and took his time paying attention and answering me. 💕
My best strategy is going in with my mom, a doctor, to make sure I'm taken seriously. I have seen the difference between doctors who know my mother is a doctor who works with the same company they do and those who just think I'm an ignorant or know-it-all kid. My mom will put any doctor in their place if they start disregarding my symptoms or spouting nonsense. Unfortunately, most people don't have this luxury.
Thank you for this! And I think migraine Jen did a great job editing 👌 I certainly would never be able to do anything close to that when I have migraines
Have you heard of the app abridge it records your doctors appointment and let's you sort it and you can go to certain points so you don't have to relisten to the entire visit
Doctors are a lot of work. I’ve had chronic migraines for 50 years and am only, just now, seeing a doctor who believes what I tell him and understands that people with chronic illness are used to putting on a good face in public. I’ve had dismissive doctors (too many) kind but not very good doctors and, rarely, an excellent doctor. The trifecta - kind, intelligent and respectful. At this point I try to suss out if a new doctor is accepting of intelligent patients or hates them. I also try to have something interesting to talk about because we all know that makes your appointment longer, gets the dr to view you as a human and increases your odds of being taken seriously and treated. I’ve also found that it helps to be reading a non-fiction ‘high-brow’ book when they come into an exam room.
It took long years to find out I got several different illnesses and what they are, and how much I wish I could have been more charismatic in the past! But at least now I always do research and take huge role in the process of healing :)
I think it can be helpful to bring videos when symptoms are happening. Along the lines of "Look the illness," you can be having a good day and say, "I wanted to show you what I look like be on a bad day..."
I'd be very curious to get a doctor's perspective on this. Because who WOULDN'T want someone to help make their job easier? I suspect most doctors who are skeptical and/or dismissive have had a lot of experience with patients who come in with misinformation, have convinced themselves that their symptoms match their self-diagnosis when they really don't, or otherwise make it more difficult to get at the root of the problem. Just like anything else you do over and over (like meet 30, 40, 50 patients a week), at some point you start to see patterns and your reactions adjust to more efficiently process those patterns. Obviously, when something doesn't fit the pattern and if an adjustment isn't made, there's a problem. (Like what Jen and a lot of the other commenters are experiencing, where their input isn't taken seriously.) At the end of the day, it's the doctor's butt on the line if they make an incorrect diagnosis or prescribe the wrong treatment -- not to mention the terrible consequences it could have for a patient. Wishing you all the best. Y'all keep advocating for yourselves.
When I was dealing with complicated health issues, my boyfriend and I would go out to eat after a frustrating doctor appointment. It was our way of changing our mindset before going on to the next thing.
“A doctor isn’t there to fix you” It sounds weird but that’s helpful for me I’ve been to a lot of doctors for my “headaches” (possibly migraines) and every time I’ve hoped that they would fix it. I think I’m gonna be more prepared next time because of that. Thank you 😊
I really struggle not to minimize my symptoms when I'm talking to my doctor. It's like an automatic anxiety reaction before I even really think about what she's asking. I think it might be internalized ableism and a fear of how people will treat me if they know how much I'm struggling. It makes appointments really counterproductive because I really don't get across how much I need help. I'm trying to think of a way to communicate the severity of my symptoms outside the anxiety-inducing environment of an appointment so I can more accurately discuss them with her at the appointment
I also have this tendancy. I found that writting about my symptoms to my doctors beforehands and handing them the letter (or emailing it a bit before) really helps for me. If I'm alone in my room writting, I won't feel the urge minimise them. Also I think going to the appointement with someone who knows you very well can be helpful, because they can step in and correct you when you say you're "okay" about something that actually causes you pain or issues. Basically they can act as a witness and be like "no, I've seen you cry because of x y z, it's not just discomfort." If you have such a person in your life, it might be worth a try! I'm going to try that for my next appointment. Hopefully it will help!
I agree with writing down your symptoms. And having data to back that up as well is also a great way to demonstrate the severity of each symptom. To be able to say “in the last 30 days, I’ve felt pain in my arm 15 of those days,” can be very powerful data for your doctor. And it can help you and your doctor see which symptoms are the most frequent and wether they are getting more or less frequent.
Such good information! But... If you know something and Doc says something contradictory, say as sincerely as you can... REPEAT AFTER ME... "I never heard that before. I've heard this 'thing'. I'd really love to know more. Can you tell me more?"
I recommended using Abridged... its a great app for remembering what happens during appointments and it even highlights important info (tests, meds, diagnoses) and dictates certain parts of the appointment that need noting.
Abridged is a great app. I get overwhelmed with information and forget some of the details. The fine print in the app is that in certain states, like here in Florida, you have to ask for permission to record during the appointment.
I think some of these approaches might be gendered too. It would be an interesting video to have your husband weigh in on if he has had this problem as well.
Going back to the doctor tomorrow, I literally have my farmacology book with me for reference (I am studying to become a vet) because the doctor told me certain kinds of medicine I requested "don't exist" even though they have been used for years in dogs...
For me, i usually come with multiple different possible conditions that might fit the symptoms, even if one or two of them don't fit as well as the others. Then saying "I don't know, it MIGHT be A, it could be B, or maybe even C." That way the doctor doesn't feel like i'm a "google search matters more than your degree" person, but can still guide them to what I'm thinking.
I'm looking to get a diagnosis of something I think I have or more investigation to my symptoms to find out what is happening (I'm starting to worry that I will have issues when I go back into office) My timetime is 5 ish years for symtems and I stumbled along the condition about 2 years in. My plan is to talk about the time line and mention the condition in passing but not dwell on it two much. If they don't mention it when talking about invesigating the symptoms I'll bring it up again just to ask if they think it could be an option or if there is a reason they think it can't be that. Im just keeping my figures crossed because I hate confrontation!!! Thank you so much for this ❤️
great video. i've got doctors who have interrupted, disregarded, and even fasely recorded 'facts' into my chart. it's made my pain so much worse thinking i'm crazy between their non-reactions to my pain and suffering and my reality of daily living. the surgeon interrupted me when i began describing symptoms and instead went into the plan. i'm worried sick that the surgery or its complications will end me. i go in monday.
12:05 ironically the last few appointments ive had that i had to go in alone i had a bad migraine. I wrote everything down so they can read it but all the symptoms were there so proof i wasnt making things up
I usually start with naming a recognizable and informative umbrella term that covers a reasonable range of possibilities. And then try to guide them towards asking you about said umbrella term. And then i use phrases (that are definitions of buzzwords). And after you give that phrase, give an example of how it showcases in your life, and sort of 'stumble' on the buzzword towards the end of your example to sort of unknowingly guide them to what you specifically think it is. (For my example below, im gonna use tourettes as the diagnosis im trying to steer them towards) For example: using the word 'nuerological disorders' as your umbrella term. And your buzzword is going to be 'tics'. So after you use the umbrella term (nuerological disorders), use that defining phrase, say "yeah, sometimes my body makes uncontrollable and unpredictable movements and sounds." Then give your example, "like sometimes my neck violently jerks as im just walking down the street or I'll repeatedly make a clicking noise with my mouth." And now you stumble onto the buzzword, "yeah, its like... when someone🤔... tics!!!" Obviously the umbrella term and buzzword being used will change based on your situation and how much the doctor your talking to knows about it. Doing this makes it so that they know you know *some* information while also making them feel like they know more than you (even if thats not actually the case).
I had been finding that if I spoke too much like a textbook, (I'm a writer, big words are my jam) then I was taken less seriously. I felt like I was being judged as though I were a hypochondriac who researches symptoms and uses those terms to sound legit. I had to scale back my vocab, and just describe things in "layman's terms" to sound as though I'd actually been going through the things I had been claiming. So yeah, I think I'm on the opposite side of being well-researched. One of the pieces of advice that I really appreciated was the idea of emailing ahead of time to give the doctor a chance to research it if they desire. I'm moving out of state, so I feel this will probably be very important as I'll have to look for another doctor. That's panic-inducing to me. Luckily, I'll be moving to a smaller town in Oklahoma where the wind comes sweeping down the plains, where I have family nearby, who will be able to direct me to their favorite doctors. So, silver lining, for sure.
I feel like the buzzwords are very usefull, but I would admit my prep during my apointments... I was that "Friend" couple times to my family members And their apointments... Another person to take notes is very helpfull but as an Child ( adult but still daughter) I was not offten listen to. And as a person with paramedic licence for sumercamps I know how to mesure vitals and how those informations can help save time if you take notes of everything... So Yes taking notes is very important.
I just did my dissertation looking at social bias against women who seek healthcare participatory in relation to hEDS and all the co-morbids its pretty depressing when you consider it's 2021.
@@annie123e yes can you message me your email? The study was for my master's degree in autism, I looked at health disparities of autistic women relating to hEDS and all co-morbids, for this I looked at disparities in health care for women and also autistic people, I referenced just about all recent research on all of these areas, so it is useful and relevant for all of these. My supervisor said it was an important and relevent piece of work.
I have no "Motility" lack of BMs, not constipation but nerve damage brought on by Dementia. The new buzzword I'm finding out is "Gas Lighting", where doctors refuse to address your illness, indifferent or lie if you will. Out of frustration with the third doctor, I put it to him directly, "Am I to die with a serious infection brought on by a ruptured bowel?" He shook my hand and ended the appointment. I'm to see my GP in two weeks. How am I coping? I drink two letters of water over three hours and take "Magnesium Citrate", available at pharmacies which allows along with water for the stool to exit from my body without a natural bodily function. I have a fear the government is involved in our medical health. That president before Trump took over the system by inflating people's insurance costs. He said in a Town Hall setting that he didn't see the point in treating with expensive treatments on the elderly. I'm seventy-four. On top of that these immigrants are getting Medicare without having paid a dime into it. I will go down fighting if need be.
Thank you sossoso much this means the world to me. This is an amazing reminder on why I followed you. You are an amazing person and I am very grateful. Thank you.
The "hey, honey" killed me. Also I feel targetted by all the things you say that you shouldn't do/think after an appointment that went poorly. All these tips are super interresting, but also it's so frustrating that it ends up being on the patient to plan how to present information, how to portray themselves, and so on, rather than on the doctor to simply trust what we tell them and actually listen to our concerns without judging, thinking we are hypocondriacs, or thinking no new information a patient brings can ever be relevant. Sorry if that sentence was way too long and convoluted.
Horrible appointment w new neurologist on Friday!! Claims my paralysis, breathing weakness is from migraines as well as POTS, as well all the other symptoms not transverse myelitis that has came and went since discovering it on mri in 2012. He disputed the mri findings!! Lol
When I started getting chronic migraines my doctor at the time wanted to push pills and didn't want to dig deeper to make sure nothing else was wrong. So I went to another doctor who he will prescribe you pills as a last resort and tries his best to find out is there something else going on that we don't have to push pills on. Unfortunately with my migraines we came up with nothing but we tried other things. This event opened my eyes to how doctors work for us and if we don't like them then we can move onto the next. Another thing I found was VERY import when you do suffer from any time of chronic health conditions to have a medical team that is willing to work together. If all your doctors can't play nice in the sandbox that can also hinder your health and sometimes it's better in the end to move onto another doctor that will take you seriously but also your other doctors respect their opinions as well.
I always remember when my pediatrician told me at about 8 years old, 'when you're sick, I need you to act sick. I can never tell when you're actually sick because you always put on your bubbly personality.' I still struggle with this twenty years later Haha
Hey Jen, I am new to your channel, but I really appreciate the content that you’re putting forth in this forum. The thoughts and experiences that you’re expressing here are very much food for thought, as well as good information to know. I wouldn’t consider myself in anyway disabled, but as a person that’s been suffering from a couple of chronic illnesses for years I understand where you’re coming from. I have seen the good, the bad, and the ugly when it comes to dealing with doctors, knowing my body, and my health care over the last 30+ years of my GI Journey. So I appreciate any suggestions that you offer when it comes to prepping for a doctors visit, and then having to advocate for myself and my healthcare. There are some really good doctors out there, and there are some really talented doctors out there, and the two most certainly can be mutually exclusive. Occasionally I run into one that is not only talented but really good and care about their patients. So I will always encourage people to advocate for yourself, ask lots of questions, and Expect Answers! After all that is their job!!
Okay first off. That sign off...Epic😂👏🏽👏🏽 Now for tactics. I'm a bit more on the extremes side, but have a hard time sticking up for myself (partly because of memory issues partly because I'm a feeler). Usually (meaning always until now) I just listen to what the doctor has to say and don't question anything. This has lead to prolonged misery and no new treatment or diagnosis. I have ddecided I'm tired of being pushed around especially since my doctor doesn't know a whole lot about any of my conditions (chronic migraines, hEDS, IBS-D with malabsorption, she does however know a decent amount about POTS and highly suspects it so there's a plus). So anyway when I go in in April I'm going to be a vocal advocate for myself and play what I like to call the passive aggressive role. I will present my symptoms (I have a list written out) along with some mild research, and ask politely for referrals especially to a headache specialist. If I'm not listened to I plan on getting to the aggressive side and pointing out how all these symptoms correlate under a certain set of diagnoses and that I'm am strongly wanting testing and I know what needs to happen next and all I want is answers whilst not telling them they are wrong. Now this being said my doctor is pretty good at listening to me so I do expect her to be rather attentive. I am also not against busting out tears and the emotional factor if needed. It should also be noted that this fits with my personality of being a feeler and emotional and defo will not work for everyone. I hope this helps provide some insight on some future tactics I feel will work, and some past tactics that definitely haven't worked.
"Don't mistake your Googling for my five years of medical school." 'Don't confuse your five years of medical school with my 40+ years of living with this."
Thank you for such a timely video! I've taken a longer break from seeing doctors, but have an appointment coming up this week! I might re-evaluate my strategy now ;)
Awesome video. I see a new neurologist in May. After seeing a male neurologist for 20 years, it feels like his compassion and determination of helping me has dwindled into limbo. So I have a renewed hope for this new neurologist, a female... maybe she will approach things with a different perspective 🤔 I will keep these tips in mind, my husband will accompany me as he is my health advocate and support during my migraines. He will be able to help answer questions too.
When patients are prepping for drs appointments more than people are prepping for med school interviews, thats a problem.
OMG I feel this! I have read more medical journal articles since the onset of my condition than I did when I completed a Master's degree. It also takes a lot of energy to watch all the words you do so you don't offend a doctor by knowing your body and what is happening to you.
18:44 "If you don't do your job then I have to stay disabled." That really is a reality. So well said!
YES, THIS!!!!!!!!! 🤬🤬🤬🤬🤬🤬🤬
For me, the sneaky buzzword tactic works the best. Especially when I don't use the medical terms, e.g., I will say "I get dizzy and it feels like I am losing balance" instead of saying "I have vertigo". Sadly in my experience playing naive and being surprised when a doctor suggests it might be something serious works out the best. The few times I went in and asked "could it be x" I always got dismissed.
I am with ya on this one!!
Same, I did that with my covid symptoms and I did that with my migraines when I went to my neurologists. I got a new neurologists recently and I was pleasantly surprised when she suggested extra testing and asked me if I WANTED any stronger meds. This is the this approach in my opinion.
I have also noticed that starting with the most sever and common symptoms is the best. When it comes to covid I said that I live with someone who has it diagnosed and that I have trouble with breathing which I described exactly how I found it described online. 2 days later I got a positive covid test.
I did the exact same thing with the migraine. A year (of trying different meds) later I finally got to experience quite a normal life. Nowadays I have a constant headache and I get migraines every once in about 2 weeks. The headache is nothing compared to what it was before. I almost don't walk into walls anymore. The migraines are way less severe as well. I don't remember the last time I had to walk to the bathroom blindly with vertigo and coloured spots obstructing my vision.
This is so true! Works the best for me also. Sadly, if I play it off like its not serious then the doctor takes it very serious. We have to hide our knowledge!! Sad but true!
Imagine being a Dr knowing you have an illness and no one gives a damn because their arrogance gets in the way of them treating you. Ive seen doctors bring their kids in for sick visits and the dr will dead up dismiss them because how dare you tell me my job civilian ugh.
Seriously some doctors pride is too much
8:19 I've done this EXACT thing multiple times. I've done my research, come to my own conclusions, and then looked SPECIFICALLY at the red flag symptoms associated with that disease/disorder/etc. and noted which ones were applicable to me, then ONLY mentioned the symptoms during the appointment. I went from being "overzealous" and "letting my anxiety trick me" to being a "classic case" of a disorder. It's SO annoying how we have to prep and strategize before going to a doctor!!!
HI FRENS! Migraine Jen did some editing that I wasn't able to go back to correct before posting (LOLOL). So, especially if you're here within the first few hours, you may notice some editing errors. Some of them have already been fixed on my end, but the changes are still processing on RUclips. I decided to go ahead and post anyway so you can start watching in the meantime. 💜😘 (If it's been a few hours and there are other super obvious problems or big pauses, please feel free to let me know!)
I Always watch right away, good channels are rare so a few editing errors are fine
@@AM-tc2ff Thank you!!!!!!! I enjoy this so much more when I don't feel the need to make everything perfect.
Is 2 hours long enough to be considered a few hours? There is one small error at 25:41, just a take that needs to be cut, but the rest of it is all good. Thank you so much for making this video!
awww, I wanna see the original, not the "director's cut"
@@litesronno1shome It would have a looooooot of pausing!
I was in pain for 7 years before I had more severe health problems. I was told I had too many issues and to pick the worst. I visited many doctors and large city hospitals before I finally found a doctor that listened at my local emergency room and called a surgeon for his thoughts. I am now 2 years later without pain after surgery and on medicines for my other issues. I thank God every day for these 2 that listened and helped me.
Thank God. Good job sticking with it.
That's incredibly amazing! Good for you! God bless you and your continuing recovery.
@@penultimateh766 you need to make that statement as another comment not a reply to someone other than @Momming With Migraine. She would have to go through every comment and reply to see your comment. Just a suggestion.
@@penultimateh766 go away troll
@@penultimateh766 I'm concerned if it was me but I'm not worried about Jen's baby. There's many things that Jen doesn't share with her subs so I'm very optimistic that she has it under control. She's dealt with her condition for years and knows what she has to do. Have some faith friend.
I'm a plan b girl - I deliberately spoonfed my doctor all the classic symptoms of what I knew I had. And finally after 10 years of frustrating appointments and increasing symptoms my doctor confirmed my self diagnosis. I have post viral caused hyperadrenergic pots.
WOW you're a champion. Good one 👍 Hope you've found some relief!
But why did it take 10 years of your valuable life....
I was taught by my dad to pretend you're clueless in any situation where you're asking for help. He wasn't talking about a doctor's office but as a man he doesn't experience being not taken seriously in doctors offices (but he has experienced not being taken seriously in professional situations that stuck with him). In a doctor's office I usually start out letting them explain things to me like I don't understand bc it makes them feel in control and try to be strategic about getting to the points that are most important to me. Once we've developted a relationship I might let it show that I know what I'm talking about.
Yes! I commented the same idea above!
This depends on the doctor. When my doctor talks to me he puts things in very simple terms but I will respond with a question using the medical terminology and he get more comfortable and talks to me like a doctor. (which is sometimes too much but I can still ask for clarification) But I have been to many many more who would write you off for knowing anything or being at all prepared for the visit. So for the most part yeah unfortunately this is the right approach.
Absolutely TRUE!
That might work but in today's medical doctors they flat out play dumb in my case.
This is so detailed, and SO vital. I know SO many people who needed to hear this as they navigated the medical system, and continue to need it now. Thank you, thank you, THANK YOU for putting your spoons into creating something as thoughtful, helpful, and in-depth as this. I'll be sharing it next time someone in my Zebra chat for EDSers is heading into a doctor's office for a new comorbidity diagnosis.
Writing notes as I see my gyno next week about a suspicion of Endometriosis. ✍️✍️✍️
This is a amazing video topic. Some doctors are closed minded people but giving up just hurts your health
Thanks! I completely agree. Wish it could be easier, but either way, they're the road to recovery. We need to join forces.
I had never thought that the fact that I'm extremely social could affect my doctor's perception of me and my symptoms. Great insights, thank you!💗
The phrase I found useful is “does lt seem to be reasonable “ ( fill in the blank). I was a medical professional before retirement an I found communication with anyone I worked with easier using that phrase. Thanks for helping people to understand chronic illness and how we feel. You are the best. Will you ever let us know the baby’s name?
I have totally done the "I think I know works wrong with me and what I need" thing with multiple doctors. I find different doctors take it way differently. I was completely dismissed by one Dr but a month later found another doctor at a major teaching hospital who worked off my bunch and 2 months later I got diagnosed with with an extremely fare condition. ADVOCATE FOR YOURSELF.
I've used both sides of the "battle". Using key words and leading doctors to a diagnosis/test is probably more effective because the doctor thinks they are doing their job. The only problem with this method is that it is only effective if the doctor is knowledgeable on the subject. The hardest thing is often to convince your family doctor/GP to do a test or refer you to a specialist on things that they have little knowledge about. That is where doing your research and providing good quality references etc can come in handy, I like to use uptodate since it is what many doctors use for research/reference.
Lmao I died at "Hey honey!" 😂 😂
Thank you for sharing. Medical anthropology literally studies all of that. It's frustrating for so many. The system is broken. I preach what you said!
A lot of You Tubers sign off with bloopers. Maybe you can sign off with a film of Buddy being a dog.
This comment took an unexpected turn for the better.
@@MommingwithMigraine hahahaha. Just my way of making two suggestions.
I agree with what you are saying Jen. I think we need to speak up, but always in a polite and kind way (if possible). I have had a bit of inaccurate information put in my charts over the years, simply because some Drs have been dismissive, disinterested and impatient. Fortunately, this doesn’t happen too often. Some Drs do roll their eyes back, but usually the rude ones will make light of your symptoms. I have had incorrect information put in my hospital chart when I have been seen by a ‘fill in’ Dr instead of my usual consultant. I even had a junior Dr laugh about one of my symptoms simply because he didn’t know enough about my rare disease to take the symptom seriously! So, I ended up going to see my regular GP to get an anti inflammatory puffer to help me breathe a little easier. I have another appointment with this specialist Dr today and I am going to tell him about the way his junior Dr made light of a very important symptom, and how dismissive he was. He should have admitted that he wasn’t knowledgeable about rare autoimmune diseases. If only some of these doctors realised how their words and/or inactions can hurt a vulnerable, disabled, sick patient. 😢🥺 I am glad I had my husband with me but he was a bit shocked and confused so didn’t speak up either. I always think about what I should have said after the appointment, when it’s too late. 🙁 I usually deal with it by telling myself that maybe the Dr was having a bad day. I wonder though, does the offending Dr ever stop to think that a disabled person may have ‘a bad day’ everyday? 🤔
I ended up self diagnosing myself correctly, and glad I brought it up but in a light "oh I read some research to be able to communicate how I felt better." It was something super rare so it was put on the back burner, but when things started to get worse my doctor thankfully remembered me bringing it up and didn't take long for him to start testing for it and bam! It was that exact thing I had read a personal testimonial from a patient. I have to say I am thankful for a doctor who listened and he even said that if Doctors actually just listened sometimes they would get places faster with their clients. Granted this was something that was progressing fast and was quite life threatening so the urgency certainly sped things along.
I took notes of my symptoms to my last Rhuematogy appointment. Dr was wonderful, he didn't have answers for me, but wasn't dismissive. He said "wow, you're a tough one aren't you?!" And said he would need to look into it and get back to me next appointment.
Thank you for this! I've also had my fair share of doctors, psychiatrists and psychologists be really dismissive with me. I've been trying to get diagnosed with persistent depressive disorder (also known as chronic depression) for a while now, and every time they tell me that my situation is temporary and diagnose me with major depression, and throw random medication at me. They don't listen when I tell them it's a milder, but chronic version of depression. Next time I go in I'll definitely try to politely ask my doctor questions like "what's the difference between this and that" or "why do you think I have this and not that".
Thank you for putting yourself out here to all of us, :)
You're so welcome. I appreciate your encouragement
I research and always prepare for doctor appointments. I am a retired medical transcriptionist. I can usually speak the lingo. It is extremely frustrating to say this, but I have found that when seeing a male dr, it is often beneficial to have my husband with me. Even if my husband does not participate in the conversation, I feel like I am taken more seriously when he is there. This is so damn frustrating!
I have fibromyalgia so I have seen a lot of doctors for that and other medical issues. My tactic is usually on the first visit to sort of “play dumb.” I might use the buzzwords that I have learned from my research, or to just better explain my symptoms. If I find this doctor someone who is willing to work with me, at later visits I might guide them towards my research.
Thank you, Jen, this post was very helpful.
Doctor with a Superiority Complex: buzz words. The doctor who wants to figure out how to treat your symptoms: detailed. Got a new PCP recently. Came in with a list of meds I'm currently on. Mentioned past history of tests and results in regards to symptoms I'm experiencing. She now knows what I've been dealing with, what has been checked, and what paths I can see now. I'm autoimmune, so describing the symptoms for "I know this is part of xxxxx, but this is new" is pretty much every appointment for me.
It took me almost 10 years to be diagnosed with narcolepsy... it wasn't something I thought I had because I was used to the melodramatic portrayal on TV, but knew something was wrong and it wasn't normal to be in my early 20s and to constantly feel exhausted (so matter how much I slept). Every doctor just automatically went to "young female, must be depression". I do suffer from depression, but that means I know what I feel like when I am depressed and this wasn't it. GP (general practitioner) also wouldn't refer me to a sleep clinic, because usually people are being tested for sleep apnea, and I was told: "you can't have that, you aren't overweight" (which is just flat out wrong). Finally it was my dentist that got me referred to an ENT because I was also getting chronic tonsilitus and he would always notice it. From the ENT I eventually got a referral to a sleep specialist, but it still then took over a year to get a diagnosis.
"You can't have [sleep apnea], you aren't overweight" - huge load of bull! I had it when I was a baby, and it kept me from GAINING weight, and now I've got it again almost 30 years later (though thankfully only mildly), and it causes my O2 to drop extremely low while I'm asleep.
Love the background, especially the little Dobby. I also like how warm the lighting is, it's cozy.
Dobby has a sock, he is free =) And that's awesome! I left my normal office light on in addition to the studio lights. I liked it better, too.
Omg!!!
“What if she finds my RUclips..... Hey Hunny 🤗”
I laughed too hard at that xD
Doctors also only have a few hours for some topics. So, the patients are the experts
That's an excellent point.
I think you should go to your Dr. Appointment and be sneaky. Start out slow and tell them your symptoms so they don't dismiss you. I've been through a lot of appointments, I've always brought someone with me, because I have trouble remembering things.
I really hope you find a Doctor to figure out exactly what is wrong. I'm praying for you.
That's the passive aggressive I'm talking about tell them the symptoms let them connect the dots, and if they don't then present research and tell them what you want to have happen from there. Bravo!!
Definitely NEVER mention that you read something on Internet. I once said "I read on Internet that I should consult it with a doctor". He rolled his eyes saying "Ah, Internet..." and from that point, he tried to get rid of me, not really answering any of my questions.
I would say rather never stay with a doctor that rolls his eyes on you when you tell him you tried to educate and help yourself. I am so sorry you've been through this. Some doctor shouldn't be allowed to see patients 😥
@@kikitauer thanks, that was the last time I saw the guy. But to be fair, in last 6 years I had only one (!) really good, helpful and informative encounter with a doctor. All other GPs at my doctors surgery are either dismissive, or simply crazy (feeding you some irrelevant information e.g. connection between pollution in Manchester area and population of white moths; or comments like your back hurts, because it happens sometimes; or even quite dangerous advice: you can have a pint with your Paracetamol, because it'll help relax your muscles - and kill my liver as well, thank you very much!). All that time I thought that I'm just very unlucky with doctors, but videos like this one not only prove that this is a worldwide problem but also give me courage to stand up for my rights. Thanks so much Kiki and Jen(s).
I'm sorry, but the irony of this is hillarious. You're litteraly telling him that the internet told you to see him. If he managed to become dismissive from that, he probably wouldn't have been helpful regardless of whether you mentioned the internet or not.
@@alienorfrei6867 I know, right?! It's like the moment he heard the word "Internet" his brain shut off the hearing system! Funny enough, that was NHS website I was referring to haha :)
The first time I saw my neurologist (hard to say he's still mine because I've only seen him twice and the last time was almost 2 1/2 years ago), I told him I was suspecting that X was going on, and that the reason I suspected was because I had seen a video detailing the symptoms and official diagnostic criteria for X and what I was experiencing seemed to be somewhat similar. He seemed at the appointment to want to hear and understand everything I had to say (to the point of even asking if he could make a copy of my notes, which I gladly let him do), but later, once I got the records with the chart notes from that appointment, he had written that I had said I thought I had X because I had watched a youtube video of someone who had X, and I was like, "um, NO! That's NOT what I said!" I haven't seen him since I got those records, and I very well might never go to him again.
Thank you. I was at a doctor's office, I felt I could barely breathe, I could barely sit up and the DR says to me, well, you're breathing fine and you look good, so that's good. I was like what are you talking about. Later when I mentioned it to the nurse she said, "you wouldn't know" you look strong. And yeah like you, well that's cause I managed to take a bath for you. You're Welcome! I'm fighting my doctors right now. 2 years suffering. Also had doctor's write things in my chart that weren't true and didn't happen but I didn't know what to do about it. Still don't, I Guess. This is helpful. Thanks again 🦋
In a time were we now have the option of emailing our doctors I would certainly suggest using that to your advantage. The spoken word can be forgotten or retracted but an email with direct instructions/advice from a doctor can be printed/forwarded and used to move other medical professionals in a positive direction .
REMEMBER THE DOCTOR WORKS FOR YOU!
TW: my nephew would be dead if my sister didn't decide to get a second opinion after feeling like she was being brushed off, and as the mother of an 8y/o with a rare form of brain cancer, that wasn't acceptable to her and she felt she gave them siffience opportunities to fix it.
My son was in the NICU for a little while after birth. He came home for almost 2 wks and was doing really well. Then after an appt they said they were going to have to readmit him to the NICU because of his weight. Before they mentioned NICU I told them it was probably a mis-weigh. And when I left the appt they sent me for a blood test and told me if that was good he didn't need to go to the NICU and to just come to my appt the following day. When they called to say his blood test was good but they needed to reqdmit I lost my mind. It was made worse by the neonatalogist wanting to readmit him is a doctor that I didnt trust after our expierence. Thankfully my husband is good at getting me to get a grip. Im the one home with the kids so he asked me if I felt he was doing good. I said yes, obviously. He said okay then, how do we get another doctor involved. So when they called in the morning about getting him flu and COVID tested I said I wasnt bringing him in right away and explained why, but said we would be going to our appt that day and hopefully get in with another doctor. The NICU dr called we talked and she said she was okay with him not being admitted as long as he was back up to his birth weight within 6days. I agree. We go to his appt and they weight him, and what do you know hes above his birth weight. And they really tried to tell me this 1 month old went from 6lbs 4oz to 7lbs .5oz in 24hrs. They wouldn't accept that the day prior was inaccurate like I had said. Then they say great, no NICU come back the next day to make sure he's still gaining. So we go and hes gained 1oz. Awesome right. No now they wanna readmit again. Then use his blood test from 2 days prior to him needing to be admitted even though she said they were good the day before, and then she does CRT on him and uses that as a reason he needs to go. I point out hes been naked in an air conditioned room and was obviously cold. She said him being cold had no effect on the test, but she had just said the opposite 2 days prior. I didnt argue though. I just said I wasnt comfortable having him readmitted as it seemed unnecessary. Him and I were doing all the right things and he seemed to be doing well. The dr realized I wasnt gonna give and scheduled me an appt with a different dr the following morning as she wouldn't be there to check on him. I also had a telehealth appt with a geneticist that morning for baby. This new dr said his weight gain is good and asked if I had any questions and I started crying saying I didnt want him to go back to the NICU and this dr said she talked to my sons dr and doesnt understand why they're even considering as he hasn't lost weight once since leaving NICU, and is above his birth weight. She spent a lot of time with me that morning going over different things I had questions on, going over the telehealth appt, ordering tests, etc. That doctor has become a huge advocate for myself and my son even though she didnt become his primary dr for another 3wks. When my son was officially diagnosed as being in kidney failure she called me and left a long voice-mail with a pep talk for my husband and I and gave me her personal cell phone number to call if I need anything. All because, with the help of my husband, I spoke up.
Im someone who will permanently be effected be a drs mistakes who would be in a much better position had i just said something when i was uncomfortable with something.
I don’t have an undiagnosed condition, but last month I had a televisit with a new doctor. He didn’t have any of my labs for some reason so I had to relay everything to him. Awhile later he asked what my occupation was. I’m an engineer with a biomedical background, and he said that made sense based on how we were corresponding. I felt like treated me like I was more knowledgeable after that, though I could’ve imagined it.
I have dealt with dr's an excessive amount all my life and I'm only now understanding how to advocate because until now my mom has done it for me. I'm glad you're using your platform to do this because a lot of people haven't gotten to talk to Doctors all their lives so they need to know now. Thankyou. ❤️
I absolutely loved the added Hey honey.
So funny! 🤣🤣🤣
When I went to the ER I was in crisis mode with no diagnosis but my best friend who is in school to become a PA said my symptoms sounded like vestibular migraine. So when I went to the ER I kept saying, "dizziness, nausea, migraine feeling, pain in neck." At the end I got my VM diagnosis without even mentioning it. I think it also helped that my daughter was there with me in her scrubs.
When I went back 2 days later because things were worse I was alone and did,t even get fluids.
i mostly go the route of not mentioning things directly. for example, instead of telling my psychiatrist what i thought i had (borderline personality disorder) i mentioned that i was diagnosed with depression years before but i didn't think it fit all of my symptoms. and then she said she didn't think i had depression, and asked if i ever heard of bpd, and told me to look it up and see if i related to the symptoms. i found out i was right and i didn't make things uncomfortable.
i was diagnosed with depression, bpd, and bipolar right from the start, and i brought up that it did not fit all of my symptoms specifically anxiety. well of course i was dismissed as oh that is just a part of or symptom of the bipolar. seemed like #1 they wanted to just put me in a box and label it bipolar and that was the cause of all my issues #2 they just wanted to treat that and do as little as possible for me. It wasn't until i got a 2nd opinion and started seeing a different doctor that it is was confirmed i have generalized anxiety disorder as well as social anxiety disorder. Which has just as a significant impact on my life as bipolar does
@@miahdavis8331 that's awful. a lot of doctors are shit and completely dismissive. i'm happy you could change doctors and found one that listened to you and took you seriously.
I do the research but don't say anything about it. The information is there to help me make decisions about my care. I introduce my husband right away and explain that he is at the appointment because he witnesses most of migraines and they effect my memory, he can help share information about what happens during an attack that i don't remember. Then the dr normally just includes him in the conversation because the situation is defused before it starts.
I went into several appointments looking for my EDS diagnosis and thankfully the doctor was honest and said he didn’t know much about EDS and they referred me to a very well versed genetic doctor I wanted to see. He was the one is officially diagnosed me. My primary doctor is fantastic as well. She is willing to refer me to anyone I feel I need to see which is helpful because I have a friend who tells me the best doctors to see for EDS.
I missed your live again!!!! 🥺🥺🥺 I got so used to hiding my pain or reference behavior towards pain, that I now have a really hard time forgetting to drop the act that I'm ok when I'm not. I have an incredibly open Dr and I literally know that I don't have to pretend that I'm ok when not. I do believe that if you listen to the Dr for a few minutes, he/she will tell you how and what they're intention of how to treat you by their own personal beliefs and how they interact with you. If you go in as educated as you can be, and the Dr is trying to push (and I mean REALLY PUSHING) what they are willing to do for you, it gives you the option to either continue your exchange with them or to make a choice to speak up. If they're dismissive, you know where you stand and what treatment they're going to do for you. I've literally had a pain clinic Dr tell me to "read a book called "Unlearn Your Pain". That was his best advice!!! It all stemmed from him reading my referral to the clinic and only choosing to see the word fibromyalgia and IGNORE the fact that I spent literally 2 years having nerve ablations throughout my entire spine with some success and that I have been diagnosed with osteoarthritis in my whole spine, stenosis and sciatica. I ,at that point, had been dismissed by so many Drs that I completely lost it. He was rude, unempathetic and spent not longer than 10 minutes of his time with me. @Momming with a Migraine, I agree that you need to take time out from excessive Dr appts. The 2 years that I spent having nerve ablations was entirely too much for me and I HAD to stop for a while. I didn't recover as quickly as I was told I would after each ablation and spent a week in too much pain. I thought since I had such a great Dr doing the ablations that I had to continue. After 2 years, I really couldn't find the strength to continue to do that to myself. I'm apparently having a Migraine Jen moment here and just rambling on. I do hope that someone else will get my point. Peace and blessings to you all. 🙏💖
I really like the using the buzzword suggestion. Often it seems like doctors don’t necessarily agree with you unless it was their idea first. Sad but true.
You look great in that shirt by the way! Thanks so much for sharing this advice.
You are awesome! Love this channel. 💜
Love today’s sign off! Props for keeping it in. 🙃
SO much great information in this video. And your objectivity WITHOUT apology is refreshing. You both acknowledge humanity, respect, self-advocacy, differing POVs and experiences, situational differences; all without compromising yourself and what you know about you! And you don’t let uneducated comments sway you. I don’t care how many degrees a doc has on the wall, they have never lived a day in your body. And when chronic symptoms are unpredictable, they damn sure go into hiding the day you have an appointment! 🤬 As you said, you just want to feel better. You’re not bored with excess time on your hands (and 💰in your pocket!) to wait months for an appointment, jumps through hoops to GET the damn appointment, then go to the appointment just to be an obnoxious hypochondriac and challenge the doctor! Okay, sure. If you went in with completely unrelated research and symptoms to what your appointment was for, I’d say your pushing the envelope. But for f*cksake, it’s not like you were med seeking!!!! You’d think they want to order all sorts of tests to get paid! (okay, now my emotional level is getting in the way.)
Learning to live with and manage a condition you know to be real for you is one thing. But any chance at something different that’s treatable? Something that could give you your life back?!?! WTF?! Of course you’re going to pursue it.
I love your view on the doctor-patient relationship - they ABSOLUTELY work for you! And of course you have respect for them or you wouldn’t have sought their help. But that in no way implies they are always right and you are trying to work the system! Especially in this particular scenario! What on earth are you gaining by actually having a leak?! I’m obviously too worked up and will stop ranting now. But you are doing the world a favor with your videos, and you’re making a difference. I hope that is a tiny consolation. (Although, I’d selfishly prefer to feel better.😉). 💗💗💗
I've tried so many different approaches with doctors. I hate the "dance" we have to do to be heard. I'm a healthcare professional (or at least I was until I had to stop working because of chronic illness) so I know how to navigate the information and the "system." But... I've had horrible experiences (cue the medical PTSD), useless appointments and a few good experiences. It's frustrating to have to essentially, dumb down what we know about our symptoms to not appear too educated, so we don't inadvertently offend the doctor.
After a recent visit to a very well-known medical center (out of state, mind you), I came home completely depleted and drained from the experience, swearing that I was done with doctors and that I'll just pretend I'm fine and go on with my life. That plan didn't work lol. I wish they understood the amount of energy that goes into preparing for an appointment and the toll it takes on our physical and emotional health. I've definitely used the buzzword tactic with some success. I can't tell you how many times I've heard, "yours is a complicated case" - that usually means they're not going to help me. I'm a much better advocate for other people than I am for myself, unfortunately.
All in all, I try to stay positive and keep my faith!
Thank you for this channel - I'm so glad I found it. :)
Depends on the Doctor. My regular Doctor just goes with what I say. If I say, "I think I'd be better using 'this' med for 'this' problem", then she writes me a prescription. When I come in prepared, did my research, know what I think it is and what it takes to fix, she loves that I did her legwork for her and goes with it. But, I've DEFINITELY run into the other kind, that are extremely condescending and say something like, "your couple of hours of Googling does not match my years of schooling and experience." And proceed to ignore you.
I love this advice. It’s good to see the different tactics because there is no single tactic that will work with everyone. Your sign off was hilarious.
Thank you this was awesome! I have an appointment this week, perfect timing. I personally like to go with doing a lot of research and use the right terms but in your own words, careful not to self diagnose because I’ve found doctors don’t handle that well. I agree with definitely advocating for how your symptoms affect your life. Never give up!
Thank you so much for sharing these, along with your own experiences. We appreciate you so much ♥️
Thank you kindly
I like you 560,000% more for that "Hi, honey!" That's all.
I've had both reactions from doctors. Where I come in being like hey I've done some research and this is some of the stuff that makes sense. I try to be in the middle of knowing to much vs to little. But even being some what informed makes doctors often dismissive to the point where doctors have taken a diagnosis I already have and disregarding it. Taking the information I know about my diagnosed condition and saying becuase of this,this is what makes sense to me. They turn around and go,but you also have this problom so that can't be right! Completely disregarding my diagnosed conditions. Simplely becuase I came in informed about my condition. Well as I've also had doctors that get rilly exsited when I say I've done research. It depends on the doctor. Genrealy you should wait intill you met the doctor and then decide what to do. But if it makes you more comfterble the most I between you can get is by telling the doctor "hey I've done research,but before I say any of my thoughts on it I want to hear what you think first" it makes it seem like your genuinely trying to get their opinion,not seeming overly confident,and still giving off the idea that you not gunna put up with anwsers that dont make sense.
Thank you for this vital information. I wish I had found this video when it was originally posted a year ago. 👍
Very informative and relevant ❤️
I love your advice and have had experience with dismissive doctors, but being in the U K it doesn't seem to work the same as in USA if you can't get past GP you are stuck unless you have private health insurance and even then you sometimes need GP to refer you. We don't have a way to get to the doctors we want to see if the GP doesn't refer us, we can ask to see a rheumatologist, neurologist or any other kind of specialist but if GP doesn't think we need it we are not referred, love NHS great medical system but can be frustrating for long term illness. I have Rheumatoid arthritis and fibromyalgia, was sent to a pain clinic where the medical professionals who where supposed to help us, because it was a group session, came across as it's all in the head, I challenged them with a rather derogatory saying "it's mind over matter" she agreed but I hadn't finished I responded with " yes if you don't it doesn't matter" many of the others there for many different chronic pain conditions agreed with my sentiments needless to say I did not go back to the clinic but I was not the only one. I have since attended a similar where the outcome was much more positive and helpful I have learnt that my condition will never improve but how to manage my symptoms not that that is easy fail quite a lot. Hidden disability is hard to deal with I always feel as if I am doubted and suspected of falsifying my symptom's I also do the smile, agree, hide how bad I am and say as little as possibles about my symptom's.
Bless you for this video. You are amazing. I know that right now you're probably crashed on the sofa or the bed. Trust me, I know what you're going through with the spoons. Until next time, toodle-oo 💜
Thank you! Yes... I'm about to be on the couch 😛 See you next time!
The best advice I was ever given about Dr's and their attitudes is remember this " Dr's are In a medical practice, which means they are practicing medicine". They are human and most are trained to get a feel for what you have in about ten to fifteen minutes. That's regardless of how long you are examined and speak. Pay close attention to facial expressions and body language when you are giving your issues. I have asked the receptionist when making appointment if doctor prefers a detailed full history or seems to focus on the worst symptoms.
I love the points you made. Back in 2016 I took a massive fall where my hip swelled up and had the worst bruise I feel is humanly possible. The ambulance wanted to transport me to hospital but I couldn't afford it so I said no. Two days later and no more pain so I assumed everything was ok. However instead of swelling going down, I got what is now a permanent lump on my hip. I had no family doctor at the time and the walk in clinic wouldn't run tests because they didn't have my chart. I got a family doctor sometime in 2019 and mentioned my hip at the initial visit. Despite it being years she was firm on saying it will go away over time. The pain in it is now unbearable so I brought it up again this past January and am now finally getting an ultrasound to look at it. I'm very overweight so I don't know if the ultrasound will show anything or if it is even the right test to solve this mystery but at least now she is trying. I've been pushing to get her to look at other issues too but those are still works in progress.
Praying you get answers!!!
You really have to consider yourself part of your "medical team" and see yourself as an equal player. If doctors do not fully include you in discussions or decisions, you deserve better. That can come with trauma. I once brought my service dog to an appointment and was denied access not only to my appointment, but the whole office/practice with the excuse "your doctor has a dog allergy." After having a medical episode in the hallway I never went back; it feels like a situation where I couldn't make a difference and barely took care of myself.
I has a fantastic meeting with my neurosurgeon yesterday, some because of this video, but mostly because he’s awesome And told me that I was asking all the right questions and took his time paying attention and answering me. 💕
This video is needed. I wish this didn’t have to exist but this does need to be said
My best strategy is going in with my mom, a doctor, to make sure I'm taken seriously. I have seen the difference between doctors who know my mother is a doctor who works with the same company they do and those who just think I'm an ignorant or know-it-all kid. My mom will put any doctor in their place if they start disregarding my symptoms or spouting nonsense. Unfortunately, most people don't have this luxury.
Thank you for this! And I think migraine Jen did a great job editing 👌 I certainly would never be able to do anything close to that when I have migraines
Have you heard of the app abridge it records your doctors appointment and let's you sort it and you can go to certain points so you don't have to relisten to the entire visit
Doctors are a lot of work. I’ve had chronic migraines for 50 years and am only, just now, seeing a doctor who believes what I tell him and understands that people with chronic illness are used to putting on a good face in public. I’ve had dismissive doctors (too many) kind but not very good doctors and, rarely, an excellent doctor. The trifecta - kind, intelligent and respectful. At this point I try to suss out if a new doctor is accepting of intelligent patients or hates them. I also try to have something interesting to talk about because we all know that makes your appointment longer, gets the dr to view you as a human and increases your odds of being taken seriously and treated. I’ve also found that it helps to be reading a non-fiction ‘high-brow’ book when they come into an exam room.
You had me at "There's puke in my hair"....lol, you must have been a new mother.
It took long years to find out I got several different illnesses and what they are, and how much I wish I could have been more charismatic in the past! But at least now I always do research and take huge role in the process of healing :)
I think it can be helpful to bring videos when symptoms are happening. Along the lines of "Look the illness," you can be having a good day and say, "I wanted to show you what I look like be on a bad day..."
I'd be very curious to get a doctor's perspective on this. Because who WOULDN'T want someone to help make their job easier?
I suspect most doctors who are skeptical and/or dismissive have had a lot of experience with patients who come in with misinformation, have convinced themselves that their symptoms match their self-diagnosis when they really don't, or otherwise make it more difficult to get at the root of the problem. Just like anything else you do over and over (like meet 30, 40, 50 patients a week), at some point you start to see patterns and your reactions adjust to more efficiently process those patterns. Obviously, when something doesn't fit the pattern and if an adjustment isn't made, there's a problem. (Like what Jen and a lot of the other commenters are experiencing, where their input isn't taken seriously.) At the end of the day, it's the doctor's butt on the line if they make an incorrect diagnosis or prescribe the wrong treatment -- not to mention the terrible consequences it could have for a patient.
Wishing you all the best. Y'all keep advocating for yourselves.
When I was dealing with complicated health issues, my boyfriend and I would go out to eat after a frustrating doctor appointment. It was our way of changing our mindset before going on to the next thing.
“A doctor isn’t there to fix you” It sounds weird but that’s helpful for me I’ve been to a lot of doctors for my “headaches” (possibly migraines) and every time I’ve hoped that they would fix it. I think I’m gonna be more prepared next time because of that. Thank you 😊
I really struggle not to minimize my symptoms when I'm talking to my doctor. It's like an automatic anxiety reaction before I even really think about what she's asking. I think it might be internalized ableism and a fear of how people will treat me if they know how much I'm struggling. It makes appointments really counterproductive because I really don't get across how much I need help. I'm trying to think of a way to communicate the severity of my symptoms outside the anxiety-inducing environment of an appointment so I can more accurately discuss them with her at the appointment
I also have this tendancy. I found that writting about my symptoms to my doctors beforehands and handing them the letter (or emailing it a bit before) really helps for me. If I'm alone in my room writting, I won't feel the urge minimise them.
Also I think going to the appointement with someone who knows you very well can be helpful, because they can step in and correct you when you say you're "okay" about something that actually causes you pain or issues. Basically they can act as a witness and be like "no, I've seen you cry because of x y z, it's not just discomfort." If you have such a person in your life, it might be worth a try! I'm going to try that for my next appointment. Hopefully it will help!
I agree with writing down your symptoms. And having data to back that up as well is also a great way to demonstrate the severity of each symptom. To be able to say “in the last 30 days, I’ve felt pain in my arm 15 of those days,” can be very powerful data for your doctor. And it can help you and your doctor see which symptoms are the most frequent and wether they are getting more or less frequent.
Such good information! But... If you know something and Doc says something contradictory, say as sincerely as you can... REPEAT AFTER ME... "I never heard that before. I've heard this 'thing'. I'd really love to know more. Can you tell me more?"
Love it! (Including the “Toodaloo” 😜) And am going to use this advice and keep referencing this video for my upcoming cardiology appointment. 👍🏼👍🏼✨
Glad it was helpful!
Thank you for this video.
I recommended using Abridged... its a great app for remembering what happens during appointments and it even highlights important info (tests, meds, diagnoses) and dictates certain parts of the appointment that need noting.
That's awesome! I hadn't heard of it before!
Never knew there was such an app! Thank you for suggesting it! God bless you! 🙏💖
Abridged is a great app. I get overwhelmed with information and forget some of the details. The fine print in the app is that in certain states, like here in Florida, you have to ask for permission to record during the appointment.
@@floridaflipper6717 thanks for the info. I'm definitely going to look it up and dload it. 💖
I wish these things weren't an issue. There are so many ways we still need to improve health care!!
One step at a time!
Great video! Toodle-oo 😉
Thanks! 😀
I think some of these approaches might be gendered too. It would be an interesting video to have your husband weigh in on if he has had this problem as well.
both depending on the patients gender and the doctors gender.
I agree!
Going back to the doctor tomorrow, I literally have my farmacology book with me for reference (I am studying to become a vet) because the doctor told me certain kinds of medicine I requested "don't exist" even though they have been used for years in dogs...
For me, i usually come with multiple different possible conditions that might fit the symptoms, even if one or two of them don't fit as well as the others. Then saying "I don't know, it MIGHT be A, it could be B, or maybe even C." That way the doctor doesn't feel like i'm a "google search matters more than your degree" person, but can still guide them to what I'm thinking.
I'm looking to get a diagnosis of something I think I have or more investigation to my symptoms to find out what is happening (I'm starting to worry that I will have issues when I go back into office) My timetime is 5 ish years for symtems and I stumbled along the condition about 2 years in. My plan is to talk about the time line and mention the condition in passing but not dwell on it two much. If they don't mention it when talking about invesigating the symptoms I'll bring it up again just to ask if they think it could be an option or if there is a reason they think it can't be that. Im just keeping my figures crossed because I hate confrontation!!! Thank you so much for this ❤️
great video. i've got doctors who have interrupted, disregarded, and even fasely recorded 'facts' into my chart. it's made my pain so much worse thinking i'm crazy between their non-reactions to my pain and suffering and my reality of daily living. the surgeon interrupted me when i began describing symptoms and instead went into the plan. i'm worried sick that the surgery or its complications will end me. i go in monday.
12:05 ironically the last few appointments ive had that i had to go in alone i had a bad migraine. I wrote everything down so they can read it but all the symptoms were there so proof i wasnt making things up
I usually start with naming a recognizable and informative umbrella term that covers a reasonable range of possibilities. And then try to guide them towards asking you about said umbrella term. And then i use phrases (that are definitions of buzzwords). And after you give that phrase, give an example of how it showcases in your life, and sort of 'stumble' on the buzzword towards the end of your example to sort of unknowingly guide them to what you specifically think it is. (For my example below, im gonna use tourettes as the diagnosis im trying to steer them towards)
For example: using the word 'nuerological disorders' as your umbrella term. And your buzzword is going to be 'tics'.
So after you use the umbrella term (nuerological disorders), use that defining phrase, say "yeah, sometimes my body makes uncontrollable and unpredictable movements and sounds." Then give your example, "like sometimes my neck violently jerks as im just walking down the street or I'll repeatedly make a clicking noise with my mouth." And now you stumble onto the buzzword, "yeah, its like... when someone🤔... tics!!!"
Obviously the umbrella term and buzzword being used will change based on your situation and how much the doctor your talking to knows about it.
Doing this makes it so that they know you know *some* information while also making them feel like they know more than you (even if thats not actually the case).
I had been finding that if I spoke too much like a textbook, (I'm a writer, big words are my jam) then I was taken less seriously. I felt like I was being judged as though I were a hypochondriac who researches symptoms and uses those terms to sound legit. I had to scale back my vocab, and just describe things in "layman's terms" to sound as though I'd actually been going through the things I had been claiming. So yeah, I think I'm on the opposite side of being well-researched.
One of the pieces of advice that I really appreciated was the idea of emailing ahead of time to give the doctor a chance to research it if they desire. I'm moving out of state, so I feel this will probably be very important as I'll have to look for another doctor. That's panic-inducing to me. Luckily, I'll be moving to a smaller town in Oklahoma where the wind comes sweeping down the plains, where I have family nearby, who will be able to direct me to their favorite doctors. So, silver lining, for sure.
I feel like the buzzwords are very usefull, but I would admit my prep during my apointments... I was that "Friend" couple times to my family members And their apointments... Another person to take notes is very helpfull but as an Child ( adult but still daughter) I was not offten listen to. And as a person with paramedic licence for sumercamps I know how to mesure vitals and how those informations can help save time if you take notes of everything... So Yes taking notes is very important.
I just did my dissertation looking at social bias against women who seek healthcare participatory in relation to hEDS and all the co-morbids its pretty depressing when you consider it's 2021.
Family doctor here. Could I have a copy of your paper?
@@annie123e yes can you message me your email? The study was for my master's degree in autism, I looked at health disparities of autistic women relating to hEDS and all co-morbids, for this I looked at disparities in health care for women and also autistic people, I referenced just about all recent research on all of these areas, so it is useful and relevant for all of these. My supervisor said it was an important and relevent piece of work.
I have no "Motility" lack of BMs, not constipation but nerve damage brought on by Dementia. The new buzzword I'm finding out is "Gas Lighting", where doctors refuse to address your illness, indifferent or lie if you will. Out of frustration with the third doctor, I put it to him directly, "Am I to die with a serious infection brought on by a ruptured bowel?" He shook my hand and ended the appointment. I'm to see my GP in two weeks. How am I coping? I drink two letters of water over three hours and take "Magnesium Citrate", available at pharmacies which allows along with water for the stool to exit from my body without a natural bodily function.
I have a fear the government is involved in our medical health. That president before Trump took over the system by inflating people's insurance costs. He said in a Town Hall setting that he didn't see the point in treating with expensive treatments on the elderly. I'm seventy-four. On top of that these immigrants are getting Medicare without having paid a dime into it. I will go down fighting if need be.
Thank you sossoso much this means the world to me. This is an amazing reminder on why I followed you. You are an amazing person and I am very grateful. Thank you.
The "hey, honey" killed me.
Also I feel targetted by all the things you say that you shouldn't do/think after an appointment that went poorly.
All these tips are super interresting, but also it's so frustrating that it ends up being on the patient to plan how to present information, how to portray themselves, and so on, rather than on the doctor to simply trust what we tell them and actually listen to our concerns without judging, thinking we are hypocondriacs, or thinking no new information a patient brings can ever be relevant. Sorry if that sentence was way too long and convoluted.
Thank you so much for making this video, Jen! Great info here!
Horrible appointment w new neurologist on Friday!! Claims my paralysis, breathing weakness is from migraines as well as POTS, as well all the other symptoms not transverse myelitis that has came and went since discovering it on mri in 2012. He disputed the mri findings!! Lol
Todaloo! I laughed so hard at that! Keep on you quest for a proper diagnosis!
When I started getting chronic migraines my doctor at the time wanted to push pills and didn't want to dig deeper to make sure nothing else was wrong. So I went to another doctor who he will prescribe you pills as a last resort and tries his best to find out is there something else going on that we don't have to push pills on. Unfortunately with my migraines we came up with nothing but we tried other things. This event opened my eyes to how doctors work for us and if we don't like them then we can move onto the next. Another thing I found was VERY import when you do suffer from any time of chronic health conditions to have a medical team that is willing to work together. If all your doctors can't play nice in the sandbox that can also hinder your health and sometimes it's better in the end to move onto another doctor that will take you seriously but also your other doctors respect their opinions as well.
I always remember when my pediatrician told me at about 8 years old, 'when you're sick, I need you to act sick. I can never tell when you're actually sick because you always put on your bubbly personality.' I still struggle with this twenty years later Haha
Hey Jen, I am new to your channel, but I really appreciate the content that you’re putting forth in this forum. The thoughts and experiences that you’re expressing here are very much food for thought, as well as good information to know. I wouldn’t consider myself in anyway disabled, but as a person that’s been suffering from a couple of chronic illnesses for years I understand where you’re coming from. I have seen the good, the bad, and the ugly when it comes to dealing with doctors, knowing my body, and my health care over the last 30+ years of my GI Journey. So I appreciate any suggestions that you offer when it comes to prepping for a doctors visit, and then having to advocate for myself and my healthcare. There are some really good doctors out there, and there are some really talented doctors out there, and the two most certainly can be mutually exclusive. Occasionally I run into one that is not only talented but really good and care about their patients. So I will always encourage people to advocate for yourself, ask lots of questions, and Expect Answers! After all that is their job!!
Okay first off. That sign off...Epic😂👏🏽👏🏽 Now for tactics. I'm a bit more on the extremes side, but have a hard time sticking up for myself (partly because of memory issues partly because I'm a feeler). Usually (meaning always until now) I just listen to what the doctor has to say and don't question anything. This has lead to prolonged misery and no new treatment or diagnosis. I have ddecided I'm tired of being pushed around especially since my doctor doesn't know a whole lot about any of my conditions (chronic migraines, hEDS, IBS-D with malabsorption, she does however know a decent amount about POTS and highly suspects it so there's a plus). So anyway when I go in in April I'm going to be a vocal advocate for myself and play what I like to call the passive aggressive role. I will present my symptoms (I have a list written out) along with some mild research, and ask politely for referrals especially to a headache specialist. If I'm not listened to I plan on getting to the aggressive side and pointing out how all these symptoms correlate under a certain set of diagnoses and that I'm am strongly wanting testing and I know what needs to happen next and all I want is answers whilst not telling them they are wrong. Now this being said my doctor is pretty good at listening to me so I do expect her to be rather attentive. I am also not against busting out tears and the emotional factor if needed. It should also be noted that this fits with my personality of being a feeler and emotional and defo will not work for everyone. I hope this helps provide some insight on some future tactics I feel will work, and some past tactics that definitely haven't worked.
"Don't mistake your Googling for my five years of medical school." 'Don't confuse your five years of medical school with my 40+ years of living with this."
Thank you for such a timely video! I've taken a longer break from seeing doctors, but have an appointment coming up this week! I might re-evaluate my strategy now ;)
You got this!
Awesome video. I see a new neurologist in May. After seeing a male neurologist for 20 years, it feels like his compassion and determination of helping me has dwindled into limbo. So I have a renewed hope for this new neurologist, a female... maybe she will approach things with a different perspective 🤔 I will keep these tips in mind, my husband will accompany me as he is my health advocate and support during my migraines. He will be able to help answer questions too.
I sometimes ask if they have consider an issue. I only refered to conditions I am already to my already diagnosed conditions.