Sorry to say this, but you need to get it together and get out of the house. You need to be working and using your body. Stop laying around and arguing with doctors, you're wasting your life. Whatever ailments you have, there is no pill for, so you may as well start dealing with it and stop looking for excuses.
@@MommingwithMigraine please ignore him as he obviously has no clue what you or any of us go through. He obviously has no clue that you are dealing with it and you still can look for answers. We're not looking for excuses for things rather trying to figure things out and the best way to deal with them. I would never wish what we go through on my worst enemy but if he ever had to go through what we do he'd sing a different tune. This is just part of the criticism we face with invisible illnesses and disabilities is people who have no clue because it's not seen like a broken arm or leg. I hope eventually he realizes how ignorant and wrong he is and changes his attitude.
You do realize that’s exactly what Jen is doing by making these videos right?….. remember that promotion at the beginning? You don’t get one of those by laying around…..
@@EricaDiebold mic drop 🎤 I gotta say, if full-time momming while helping thousands of people every week is wasting my life, imagine how rewarding it would be if I actually did something with it 😳
Unfortunately (and fortunately in many cases) people with chronic illnesses get EXTREMELY good at compensating, accommodating, and acting very "normal" when really we're actually VERY sick. I have severe Crohn's disease and it is rare for me to go a year without a hospitalization. As a teenager, I was a gymnast and even though I was at my sickest at the time, I'd go see the doctor, he'd do blood work and an exam and tell me I needed to be hospitalized for IV meds and I ALWAYS asked "can we wait until after my gymnastics meet tonight?" I was so sick that I needed to be hospitalized for about a week (and I did this on several occasions over about a 5 year period) and yet I still wanted to, and was able, to compete as a Level 9 (and HS) gymnast. As a young adult, around 26, I was riding my motorcycle and got pulled over by a police officer. I made some offhand comment about my life being terrible and the officer's response was "well, at least you're healthy" and I laughed and said I wish I was healthy, I was literally in the hospital for 6 days less than a month ago for a severe atypical pneumonia. It's sad that we constantly have to explain and justify ourselves instead of people just accepting our word when we tell them we're sick or unable to do something. I often cannot hold it when I need a restroom and I carry a card that says largely across the top (I CAN'T WAIT) and then information about Crohn's and ulcerative colitis. I live in a state with a bathroom access law where even businesses without a public restroom must grant access if requested. The law here actually came about because of a girl with Crohn's. The look of desperation ony face is usually enough for people to say yes if I ask to use the restroom in their business, but it is still no e to have the card to present if necessary. Healthy people really can't understand what it's like for people with chronic illness but education, communication, and easily available information are the best ways to hopefully help others understand what we're going through and how they should and shouldn't act around people with chronic illnesses. I think you're channel is an amazing example of that. I was struggling to explain some of the non-headache effects of my migraines to people and your videos have helped tremendously. All we can do is continue to educate and maybe one day, society will understand.
The biggest hugs 💜 My college roomie got dx Crohns when we lived together so I know a very small slice of what that entails. You are such a fighter. That's a great law for people who need it - a great example of the kind of progress we can make if we kindly speak up 🥰
As a chronically ill patient this is a comment I absolutely hate. Oh yeah! I know I look healthy but I know that it's not true. Your channel is the best. Just because you talk about things all patients want to say but don't dare to say. Thank you so much! Hugs from Norway.
I'm so glad that my content resonates with you so you don't feel so alone (although also disappointed by it, of course). You are so, so welcome. I think it makes sense that people can't understand what they've never seen or learned about, so I appreciate you supporting my channel so invisible illness becomes more recognizable. Love, migraine jen
I come to RUclips to feel less alone with my chronic illness symptoms so I really appreciate videos that tell your story. Updates on where you’re at with getting a diagnosis… how’re you’re managing your day to day life… if you’ve found any new management techniques…. anything you’re struggling with…. These are the videos that really help me. Thanks so much for what you’ve done so far xx
Thank you for this. It doesn't help that my disability is both invisible and highly variable. If I don't know what I'll be capable of on a particular day, I can come across as flakey or lazy if I was able to do that same thing previously.
I have seizures and chronic migraines and I feel that what you said at 15:20 I true to some degree... I get silent seizures or petit mal seizures more than I get the typical grand mal. When I have the petit mal seizures people think that I'm faking it to get out of something. I basically look like I'm zoning out so people outside my family dont recognize the difference between seizures, migraines, and me having adhd and not paying attention. Not criticizing anyone in any way just offering my own experience.
It's Migraine Jen but I'll do my best. YES that sounds just like the episodes I was getting from topiramate, so I feel like I get you so much right now (FEEL like, I know I could be wrong). I was told I was having "partial seizures." Like 14 per day. I don't have adhd, but Migraine Jen certainly zones out in a similar way. I wish I could truly get across to others that it's a ridiculous thing to fake, you can't fake something you've never heard of, and how sincerely we also wish it wouldn't happen. But I also completely understand that it's weird, and I DO get why they don't get it... from experience! I was translator for my semi-mute husband for 3 years 'till his surgery, so I get being the able-bodied person around a person with a misdiagnosed and rare disability. I can't blame them for a second. Love, Migraine Jen
I feel panicky every time I go to the doctor for severe pain from endometriosis, because I've never had the severe pain in front of a doctor. I feel like when I tell them "The pain was a 7/8/9/10," people think I'm exaggerating because they see me at a pain level 5 or something where I can mostly function "normally."
I have the very same issue and I am with you on the frustration and eye rolls when I describe the worst of it as actual labor. I have several chronic illnesses and it’s exhausting having to work to be believed. Who would choose that??
I am so glad you covered that you are able to sometimes go without your service dog. I am in the process of searching for a dog to owner train for psychiatric assistance, and was feeling the whole "imposter syndrome" of a psych SD. It took many people to tell me I need a service dog to realize that even if I use a SD 80% of the time, I still need a service dog to have quality of life. The 20% I might not have a dog with me does not negate the need. If someone with a guide dog chooses to use a cane or sighted guide sometimes, that does not negate their need for a guide dog. I almost laughed at the part about some people believing a person would go through the effort to train a dog for PA, buy the gear, train a fake alert, and lay down in public just to cause a scene. Almost - I've seen ambulatory wheelchair users be accused of faking because people assume you must be 100% paralyzed from the waste down to use a wheelchair. Ah yes, all these people faking disabilities because it is such a glamorous life to be denied access and harassed in public.
I’d love to see more service dog and disability related content. I love the mix of educational with the funny parts of chronic illness. Keep making great content ❤️
In reference to videos I like to watch of yours; Personally, I like story times and anecdotal comments that tie into your life. It’s fun to be a fly on the wall of your journey
I really love your day in the life vlogs of how you live with a chronic illness. I also really like the tutorial style educational content you have about different things.
Yes!!! I was that girl that was super fit, skinny and active non-stop. I lost all my weight from my twins BUT 2 years later (41 ish) all my flu like body aches n odd bouts of fatigue came full force. I was diagnosed with Fibro and possible this n that... I went down hill, got on meds, gained 20lbs and managed to in the next few years find a system to help so I was able to homeschool yet I cant work. Despite all I went thru n most knowing what I have, I get the lazy n fat tag. Im just like don't be jealous I got these boobs for free. They are new to me-a compensation gift from God lol. It's a positive way of looking at my weight. 😁😂
I really enjoyed this video Jen, you do a great job of highlighting the pros and cons of having invisible disability. I’ve always said that one of the things I feel the most grateful for about being visually impaired if that it’s taught me to never judge someone by their appearance and to be wary of the fact that so much of society seems hell-bent on doing just that
I enjoy all of your content. Well, I usually pass on baby stuff but it's just because I am not really a baby person. If you ask me, just keep up the good work! ♥😄
You are such a strong, positive, and wonderful person. Thank you for your honesty and sharing your life with us. Give Buddy some snuggles for me please.
Thankyou for letting me know I'm not alone in this. I often worry that friends will not believe me because they only see me on good days. It's hard because sometimes I feel like people just think I want attention which honestly just makes me feel really sad.
Your informational videos about chronic illness and service dogs are my favorite, because they relate the most to my own life. But I really enjoy all of your videos, because I like the variety and enjoy learning about new things even if it isn’t applicable to my own life. So I hope you keep doing a little of everything like you are now! I always look forward to checking your channel on Friday night to see what you posted for the week. 😊
Hi Jen! I would actually love to hear more from you as a biochemist. It was really interesting to hear you discuss drug approval and how promotion can sometimes be deceiving!
I have limitations related to PTSD, a balance/vertigo disorder and migraines. Everyday is a challenge but with a lot of effort and planning I can pass as normal at times. Everything you say is truth. I am learning how to train my little service dog. I am coming to terms with bringing my dog because it creates anxiety dealing with the public's reaction. This video really helps me.
I have a number of friends with invisible illnesses, not counting myself. Thanks for spreading the word about invisible illness! Your video has me thinking about cultural encoding - the way that we embed information in clothes, language, music, food, art, and all of the other elements that we carry with us everywhere. This phenomenon is partly responsible for our assumptions about a person based on what we see. On the other hand, perception can be very different when we are humble, lead with kindness, and assume best intentions. Try though I do, I find that these things are still not reflex for me, but I succeed more than I fail. Probably the most influential aid there is that I possess one of these invisible illnesses, so I know that looks can be deceiving.
I understand I have complex migraines and MS. There are days I can be totally normal and then slide down hill to the point that I can’t get out of bed the next day. I am lucky I have a part time job and they are understanding when I call out or use my cane. But not everyone is so understanding. I have applied for hundreds of jobs and when they have the ADA check box they never call when I go for an interview and have to use a cane I never get a call.
Never judge a book by its cover. One of the best sayings, but still so woefully inadequate. You can tell people to have compassion, to not judge, to treat each other nicely, but that just doesn't carry enough weight or specificity with it. What you said in "You have no idea what another person is going through, because you aren't them" (paraphrasing) is about the best thing we as friends, parents, advocates, educators can tell people. No one is anyone else. We are not inside another's head. We have no idea what they are going through not just physically, but mentally and emotionally too. Nor do we know how that person perceives themself, their condition, how they feel it effects their life, or how having this condition has shaped their overall perception of the world. Golden rule really stands tall here. Lesson is treat others nicely, and the way you want to be treated. As far as videos are concerned I do like the mix of videos you put together. Some education, a good dose of advocacy, and some DITL Vlog type bits. I think you should stick with the survival guide type videos I think you already explained very well what your conditions are so further educational videos aren't really necessary. Now were on to migraine, or POTS/dysautonomia survival guides, your current go bag contents, family life (especially raising the little ones with your conditions), a DITL Vlog, and if you take a big trip somewhere a trip Vlog. I do think you should throw in more migraine Jen videos too. I know this is very vulnerable, and scary to put yourself out there like that, but it does provide some insight into how a symptomatic day is like for someone. Also it just makes you more relatable. Anytime someone puts themself out there leaving themself vulnerable, and risking that scary portion it really helps others (going through the same or not) to be able to relate to you and makes you even more real. (God I hope that made sense we're getting towards the end of Aura phase here so there may be some spelling errors too bc I can't see my screen very well, oh yeah and my brain has at least temporarily taken a hike somewhere haha)
Please continue with your migraine stories. I truly enjoy them and benefit from them. I have 4 types of migraines and recently lost my job over them. 1) cervicogenic headaches, 2) complicated(complex) migraines, 3) Hemiplegic Migraines, and 4) vestibular migraines. I also have Trigeminal neuralgia disorder. So your videos speak volumes to me. You have already offered both my husband and I fantastic tips in the migraine world. I don’t have a service dog but my dog spots a lot of my migraines in the aura stages as I had to help teach her. I truly do thank you for your time and energy you put into these live videos. I also think it’s fantastic awareness as we need soooo much more!!! 💜
I always learn so much from your videos! As someone without a disability, thanks for the reminder today that you really don't know what others are dealing with. I love all your content (could listen to you 'ramble' all day), but especially the day in the life, family, and of course Buddy content 😊
I like that you share differnt aspects of what you're going through as well as teaching and bringing awareness to those of us with disabilities and chronic illnesses. I've been sharing your videos with friends and family because when the topic get brought up it is usually when I'm having a hard time explaining things and you're better in the videos of explaining how it is. I get chronic daily migraines and being looked into for P.O.T.S and/or Fibro along with brain injuries so this is very much appreciated. I had a faint at church almost 3 weeks ago so I totally get it what you're saying about how it feels to have that happen in public. I'm not scared of it but it is an uneasy feeling to do it in public and scare people when I suddenly have it happen. Many don't know how to respond but everyone seems to have ideas of how to handle things and I've seen in other public places that people crowd you and being critical. So thanks so much for talking about the hiding things from people as I did this a lot more in the beginning of when things started but then they didn't want to believe me so that turned into a major problem for me in the end and I was not taken serious at all and even accused of not really having these problems.
Personally as someone who has had many migraine Mary days I'd like to see more of migraine Jen, seeing someone else go through what I myself am often experiencing makes me feel less alone
I certainly don't know where I would be if I hadn't have found your channel on here. My migraines started to become a huge problem about 3 years ago and I was forced to quit my job just over 2 years ago when they caused both epilepsy and a stroke to arise within hours. I'm often referred to as 'The Epileptic Guy' and people forget there's a human being underneath who used to be so healthy, helpful and active. I wish I could delete my illnesses like you could a picture on your phone! Sending Spoonie Hugs and Love to you 🥄🤗💜
It’s a scary transition to start using something that makes your illness visible. Mine is mostly “hidden” still but if you look under my pant leg at the ankle you my spot my compression socks occasionally. If you see me on hikes you may see me with poles in order to be able to be on that hike. Even those two things have made me feel self conscious of them when I first started using them.
Dont mind what you says others do... just take your and energy better spent makeing the best of what you can. I dont worry about what others think. I know all about my service dog and what hes does for me.
I know what you mean, I am there. I even lost my family because of it, they don't understand and think I am making it up. Oh and my service dog is not an random breed so that makes it worse to understand but I am happy with this breed and love them! Greetings from the Netherlands
I 100% relate to this. One of my “downfalls” is I have many issues with my spine such as slipping disk and deteriorating vertebras and more. We first found out when I was 7 even though I had pain from birth and I was put in my first back brace. I wear my brace on and off now and I’m 17. The reason I don’t wear it full time now is because the custom brace I need is so insanely expensive and I’ve grown out of my previous one. So since I’m not wearing my brace and the only thing you can tell is I walk kinda awkward sometimes when I’m at work or something and need to sit down because I’m in unbearable pain people laugh and think it’s just a joke. What they see is a typical healthy 17 year old girl but what they don’t see is the doctors appointments, constant conversations of surgery, fracturing my vertebras over and over, sleepless painful nights, migraines from those painful sleepless nights and the list just goes on. But the kids from high school who saw me in my last brace know me and “that one cripple girl” and it’s just all frustrating.
This type of video is honestly my favorite one to watch. I love the way you lay things out. Sometimes they are really educational for me and sometimes they are really nice to show my loved ones when I dont know how to explain something.
Hey Jan, I just wanted to let you know that I watch your videos every Friday. I find the content really interesting, especially since I deal with my own disability. Watching your videos helps me to temporarily forget that I have a disability. Thanks for all that you do, keep up the good work.
I certainly didn't understand complex migraines until viewing your content. People *will* be ignorant about what is happening to us. Even doctors, most often. They make assumptions; it's much easier to breeze through life assuming than to keep an open mind and seek facts before judging. A logical thing for a disabled person to do is to become less sensitive to opinions and snap judgments of others. Actually, this is good advice for everyone. Don't like my pink hair? So what. You're right, we're all living a crazy story. People who form opinions and judgments without access to relevant information are misinformed and even foolish. But it's only a problem when their judgments impede us. I think it might be true that women are more highly attuned to the opinions and judgments of others than are men, on average. High emotional IQ, better social skills, the gender that attracts, all of that behavioral psychology crap. (It really is crap, psychology isn't a science, but psychology does have a virtue: it labels phenomena so we have words to discuss them. It has no other virtues that I can see.) If there is any truth to those labels, then it might be tougher for women, on average, to base self-esteem on the self and not on the opinions of others. I don't know. I haven't walked in those shoes. Hard or easy, I invite you to regard yourself primarily by the light of your own virtues and accomplishments, errors and mistakes, kindnesses and cruelties. Taken in that light, your self-esteem should be doing just fine, methinks. Invisible disability, visible disability, water off a duck's back. Since most peoples' assumptions are wrong, there's no reason to concern yourself with them unless/until they are actively obstructing you from doing what you want to do. Then you take out your skunkwater pistol, set it on stun, and dowse them with it. Cheers!
Very well written and said. I have similar migraines as Jen does, complicated migraines. They are awful! But what Jen is doing is brave and powerful. She is also bringing awareness to the forefront which is clearly what we need. 💜
"It's only a problem when their judgements impede us" really struck me. You're right, that most days I value myself, and I'm able to ignore the incorrect judgements. For those other times, I lean on kind people like you to help light up the shadows that are cast by the soon-to-be-skunk-sprayed humans. Cheers, Urgelt. [Edited for a small typo]
This was a great video. I love all the topics. Service dog info and training is a top fave as I train my 5 month old that alerts so well since 3 months old. I love migraine Jenn, I have migraines that are insane, allergy series, because I am literally allergic to everything and veggies as a vegan is crazy, plus if you have seizure convulsions content with POTS, I'm here for that for sure. It's wild to have someone that matches you in so many ways. You are great and I just love all you do. So blessed by these videos and happy to not be alone. Keep up the great work!!!!
I really appreciate your videos. As others have said it makes me feel not so alone, and reminds me that I'm NOT crazy for wanting REAL answers! Unfortunately I am coming to understand what you mean about people thinking I'm fine. I am newly diagnosed Neurocardiogenic Syncope and my family doesn't know what to do with me. I was visiting my parents 2 days ago and had some glittering diamond-type vision disturbance (vision disturbances being a precursor to syncope for me) so I laid down real quick because I can usually stop a faint that way. They don't realize because I don't tell them that so much of what I do is to prevent fainting in front of them because it would mortify me. I am an organist at church and have been having bad dreams of passing out in front of everyone...that would be so embarrassing. A lot of what you say resonates, thank you. I know a lot of ppl mean well with their comments but my heart is already stressed out when it goes to 120-140 every time I stand up so how would exercise help me at this point... Some people are ignorant and some just downright obtuse and call a dog over that is obviously not their own 😖 Hey I just thought I'd throw this out there for both perhaps this Dr can help you and see if this video lines up with anything. My hypothesis is that cervical instability is also related to the collagen issues from EDS. ruclips.net/video/4ECcS0JKqH8/видео.html
My favourite are the story time and service dog videos, but I look forward to all your uploads! If you’re looking for ideas, I’d love to hear you talk more about microbiology and other things you love
Hi sweet Jen! You also do a wonderful job of maintaining your home and taking care of your baby so to the outside world it can seem like you are very well put together when you are having a bad symptom day. I love the comment about workplace discrimination... so true. Every job I have ever gotten has not known about my illness until after I was hired! Can we get an update on how you are doing since giving birth? How have your symptoms changed since becoming a mom? Appreciate you and your channel so much. Hugs from Tennessee!
Wow can’t believe people can be so horrible in your comments sorry. I get encouragement from your shared struggle. It is true we can’t know another’s pain. I started watching for the migraine videos but I also like to see your day to day as well. Thank you for being brave enough to say what must be said.
My friend had serious back injury for a while. She was having a good day and we went to Costco. She got one of the motorized carts because she knew that she could get tired quickly, and could have problems. She got lots of negative stares, and looks because she looked like a healthy young person. They stopped when she got uncomfortable, and she put her back brace on (showing them was disabled) . So unfair! Thanks for sharing your story!
I have PTSD from school and PT and for so long I've felt like a weirdo because I've only heard of PTSD being from war and I don't know anyone else who has the same PTSD as me but people around me reassure me that anyone can get PTSD from anything that they have a negative feeling about but are still put through and that it can be any level and I've been through general counciling and mentioned it but back then i didnt know it was actually PTSD etc but now I'm looking for a councilor that does everything except general counciling and to hear that you have PTSD with showering does make me feel even less of a wierdo so thanks.
I really identify a lot with most things you said. I'm legally blind, so I hit both ends of the spectrum so to speak. In known environments I get judges for "faking" and "not looking disabled", especially with my guide dog in training with me because I don't look like I would need one to people. I can function without him and with just my cane, but that drainss my energy so much more because then I have to actively feel AND look where I'm going, whereas with my dog at my side I can just follow him and he will take me around any obstacles and warn me about any changes in elevation. But other times if I say I'm legally blind... People start babying me, people forget that they can talk to ME and start asking questions to anyone around me, and I get all these questions! "Oh you can't see well? Have you tried glasses?" "How many fingers am I holding up?" "Can you see colours?" Yes, IDGAF and yes! But neither of that is anyone else's business! I try to be polite and understanding to the fact that people don't understand, but I end up grinding my teeth SO often! At the same time I'm glad my disability isn't clearly visible because I notice the very belittling way for example people in wheelchairs or with walkers get treated. But hey, people like you remind me that it's worth to keep on trying :)
I also love all your content! I learn so much and come away happy. I resonate most with your motherhood content, as a new mom myself. But I highly value your migraine and service dog content too! The more I know, the better I can advocate for people around me!
I look forward every Friday to your video.....I completely understand about having invisible disability bc I do...Thank you for talking on this subject & God Bless you!!!
The first video of yours that I watched was one on elimination communication. You explained it so well with real examples. I wish I had known about it 30 years ago when I had babies. I passed your video on to a mama to be. Since that video I have come back for ditl and videos about your service dog. I find it so interesting that dogs can be so in tune with their handlers needs.
I have dealt with chronic migraine almost 20 years along with a few other chronic illnesses. The absolute worst damage done was by professionals who do not believe me. WHO WOULD CHOOSE THIS? Your story has been fascinating for me - and I’ve used your fainting prevention tips recently. There are things about me - like brain fog and extreme clumsiness - that infuriate me because I can’t seem to fix the problem. Again, eye rolls from doctor’s and frustration from those around me when forgetting simple things. You asked about content - I have always had extreme mom guilt for missing out on a lot of my daughter’s childhood, fear she will resent me, and more guilt for being unable to be the mom she deserves. Does that ever come up for you? Maybe you have an amazing village, but it’s a big issue for me so I figured might as well ask. Be well. 💖
I’ve recently loved seeing the videos with your daughter the most, because you’re both so joyful and sweet together ❤️ and also because the totally non-standard technique(s) you use (eg. Really just the baby toilet time one) seem so useful and interesting! Thinking I may try that when I have kids one day.
I would love to have a video describing different kinds of migraine. From I’ve been told and learned, I personally experience migraine attacks from cervical misalignment and compressed nerves in my neck (resulting from a long ago car accident ). This results in my skull feeling two sizes too small and crushing my brain from the tension in my scalp. Additionally, from the car accident, I have TMJD and chewing can cause a misalignment in my C1/C2 and it throws of everything down the whole spine. Along with causing scalp tension. While I realize this is not typical migraine, I have the common symptoms of sensitivity to sound and light, vomiting, and unbearable pain. This is NOT just a bad headache. It’s debilitating and I am nonfunctional when it’s happening. And then there’s the hangover to deal with. Any video regard “non traditional “ migraine would be of value to me. 💖
I have Spina Bifida and use a chair. This has been all of my life so it is cultural for me. But I also have migraine and Chiari - both invisible and more “disabling”. So they are both health conditions for me. My opinion only. :)
Thank you for this video 🙏 my husband left most doctors( I am on 17th) don’t believe that after minor car accident I have so many complications. I just realized when you mentioned that you don’t faint upfront other people… I was wondering about it myself and now absolutely it makes sense for me. I have very hard time to schedule POTS test and get proper diagnosis it’s mentally very challenging
I have seen people follow a pattern for content. Week 1 Buddy/service dog, week 2 migraine info, week 3 P.O.T.S, week 4... Something like this may help you to focus your content if you are unsure of the direction. I haven't found a video yet on preventative meds/procedures for migraine. I know you did the meds after on set, but not sure about the other. Thanks for everything you share. 😊
I am in the same boat I also changed my diet a lot as well in hopes that it can improve my symtomps enough to get diagnosed on time I have had this for the longest time. I would say this was happening the most in middle school.
I can relate to this so much. I forget to comment sometimes but I am watching and appreciate you! I hadn’t thought of the pros of having invisible illness before, that is such a good point.
I really enjoy the Migraine Jen vids (although, so sorry that you have to deal with that), but also I loved seeing how you lit up talking about science in your 48 hour flat test video. It wouldn't be keeping with the theme of things, but maybe a vid on what you did at work or something sciency and educational that you're passionate about.
Hi Jen! Thanks for the video :-) I always look for content that makes me understand what the world looks like from a different point of view. So I am most interested in the videos that show (the showing is more fun than the telling, but probably also more work) how you deal with migraine, pots, etc.
I wish more people understood invisible illnesses, I once had a random person ask me for a doctors certificate when leaving school because of a migraine. (like I was carrying one on me at all times anyways lol)
This touches close, not for me as I still don't have so disabled because of my migraines, but my dad with a heart condition. He had a myocardial infarction many years ago, and then tryple bypass surgery 10 years later... and people where like "but he looks so healty, so good" cause he always look tanned... but only us, knowing him well, could notice the extra shinniness in his eyes, and the slight darkness below them when he did too much effort to stay awake and active. For me I remind people don't caring too much if they understand or not, That I have low paint migraines but that they affect my memory, and my language, and some other mental proccesess. If they want to understand, ok, if they don't their problem. But I think is important for people to know that a migraine is not only "a headache". And sometimes I explaine your migraine simptoms, when someone is curious, and a friend's ones too to help understand that "the headache" is one part of it, if it's a strong acute pain is disabling of course, but is not all of it and youc an't compare it with "oh I also have headaches"...
You´re too young/beautiful/normal/whatever to be disabled and not working. Yeah, that´s kind of what I feel too, sadly this doesn´t change that I am. I´m sorry that you go through this and I really hope society starts to realize that we all don´t act as if we´re disabled, we actually try to fit in and appear to be normal. I´ve never understood why people don´t think about us not wanting to faint/seize/have flashbacks/whatever symptom it might be because we don´t feel safe in this vulnerable state in public especially because of how people behave. I do everything to prevent an episode outside and I´m definitely not leaving my home on bad days. I´ve also had a boyfriend shaming me for stealing his time after two years because he didn´t believe my health struggles were as serious as I´ve told him right from the start. Thank you for raising awareness!
Ugh, people only see me when I have spoons. Only visit my family, while I have have the energy to visit. Pissy because I only stay a couple hours, But I usually almost can't make it home. Oh me? I have Fibromyalgia and serve back pain. I take public transportation, which takes most of my spoons. And Ageism? I'll be 60yrs old in a couple of months....Oh everyone at 60 has aches and pains. No no they don't, not to the extent I do. Did I mention, it can take me 2 or 3 days to recovery from my visit. SPOONS! I need to find a Spoon cleaner, so my spoons aren't always dirty in the dishwasher. * I love you have multi-topic and sometimes rants! I just enjoy you! It's like a phone call from a friend. Oh course a bit more baby updates would be great, but thats the grandmother in me😁
Thank youuu. I have POTS, I don't faint but I go presyncope a lot and I think how i handle presyncope keeps me from fainting. I get pretty low blood pressure. I also have Orthastatic intolerance and Inappropriate sinus tachycardia. Then because of the POTS I also have MCAS. And doctors are looking into hEDS. I can relate so much to this.
It’s not a disability but I definitely feel your sentiment about your disability becoming a marker for who you are. I’m trans and most of the time I wish that it wasn’t necessary for anyone who knows me to know (even my own family) because once someone finds out I’m trans my defining characteristic becomes me being trans instead of who I am as a person and it makes me really uncomfortable.
I absolutely hate the line "but your too young or too healthy to be having problems/a disability". No one is too young to have anything. Also, appearing to be healthy like you said has it's pros and cons. Yes I may look healthy and people won't know I have a problem until my knee dislocates and I fall. And unless I mention that or the fact I have back and neck problems or even migraines. No one has a clue because I look healthy. Can we as a society just stop invalidating other people's experiences. Just because you don't see it doesn't make it any less real. Stop being a Doubting Thomas. Thank you for your videos, I like your variety. These have been really helpful with my migraine journey so far and mine is fairly new almost a year of migraines, and I'm still trying to find answers to them, as well as some other symptoms I've been experiencing.
I love how you bring awareness ❤️ I suffer with migraines since i was 15. Now at 28 I know some of the triggers, but I found that the lighting at work brings on migraines with worsening aura recently. I would appreciate any tips on what could I do about that. The first 3-4 hours are okay, then I take my hour brake outside in natural light and within 30-45 minutes of going back to work I get a migraine, most of times it comes with vertigo and feeling sick but recently I have cognitive issues too.
One thing I love is my scar from the wreck. It's about half my back length against my spine toward the bottom. Or when I wear my AFO brace for my drop foot...(otherwise I wear combat boots to keep it up) When someone starts fighting me, I can either lift my pants leg- or the bottom of my shirt in the back..... Hahaha. The looks I've gotten once they realize I'm broken and in pieces beneath the skin. And not once have I had someone brave enough to treat me wrongly for my service dog while I'm in my wheelchair. I've always counted myself lucky that I a physical scar.... And I don't want anyone else to have to think like that because of how random people behave! That's why I've been so pro-active locally. No one else should have to go through what I did the first six months of having a service dog I was so scared of people after the memory loss. Took six months for me to regain enough memories and get fed up with peoples behavior.... And a RUclipsr mentioned if they did it to me, who else would they do this to? So I got mean. I used every single thing I could tell.about them against them and in less than five minutes I had a gal that regularly sought me out to bully me in stores if she saw me.... yeah I made her cry and run away. And then I turned on the store and started pulling managers. I grew fangs was the joke with my family. They are tempered now- I've chilled alot. But wow. I used to get so upset and it fueled me to curb how people behaved. Managers have seen me at my worst. Gosh. It's been a while since I shared the rage of it all. XD
Hahaha my church had a few that didn't think I pass out for real- till I started training my VBS partner teacher how to handle saph.... who listens to no one else. Just how to remove her from her stay and how to put her back if I do pass out. Last year I was with a teacher that knew my story and works well with dogs and saph listened to her decently. I'm updating all their info for if I ever pass out.. And the first list attempt had the office lady's eyes bug out. Now she gives me extra hugs and is quick to defend me from some of the members that just don't understand. They are starting to though.
I know that this is very different from having a service dog but for school I have an accommodation to bring and use my own personal computer In class and before the pandemic I was the only one with a computer and people who "knew" me and saw me with a computer would act differently around me than thoughs who didn't see the computer and same with people who got to know me without the computer and then saw the computer would treat me differently and talk slower and use smaller words there were very few people who would still treat me as an equal if they knew I had the computer
Remember you are not alone I have a csf leak and other illnesses but I keep getting ingnored. I am going to end up dead or killed because I am not fully there
I am also disabled but I don't have a service dog I have cerebral palsy and use a chair people treat me like that all the time especially at restaurant they refuse to fill my drink I have to have somebody else ask them it is discriminating
Thank you for this video it’s perfect I have a visible disability and then I also have multiple invisible disabilities that includes migraines and possibly CSF leak problems and I also currently I’m getting checked also for white matter disease in more detail as to what’s going on with MRIs and as far as the CSF I’m getting an MRI for a fluid study test and also I’m trying to get enough fluid to come out from my nose to be able to give a sample and I have not been successful it goes to the back of my throat and it does taste horrible like salt and metallic so I’m having two MRIs done on the same day coming up on the 11th and the other one is a brain study for the white matter degradation
I’m too familiar with the problem, my dad has a LMC (chronic myeloid leukemia) and unfortunately his treatment has cause him a lot of sides effects like loosing completely some nerves in his arms and legs and he has almost gone blind but if you look at him he seems just a regular man and since he still has the force to go to work and have an almost normal life people just assume that he is okay he just need to take a pill it’s not that big deal, or when he was going blind and he didn’t know that it was caused by his chemo and he was really scared his boss and some of his colleagues told him that he just needed to change his glasses. So people can be really mean sometimes
I have low-support needs autism (can be invisible as I don't fit the narrative of what autism loos like). Pro is being able to turn it off and . Con is when masking doesn't work in a situation and I come across as either attention seeking, creating drama, or just an asshole. 😅
Different types of migraines. More lifestyle adaptations and hacks to make daily life easier while chronically ill. Also how do you cope mentally with all that's going on physically?
These are huge, huge topics and I think I've put them off because I want to do them justice. Thank you for the suggestions. I'm excited to get more into mental health
Thanks for the weekly video, Jen!! Odd question... have you ever seen a chiropractor for migraines? I just went to one for the first time yesterday (SI joint issues) and he felt my neck and asked "do you get bad headaches?" and i said "well i get migraines" to which he replied "yeah you definitely have a migraine neck"....I'm so confused, i have no clue what that means or how the hell he could tell that from just feeling my neck and I was in shock so of course I didn't ask.... just wondering if you've ever experienced anything like that
They told me and my mom that I am heathy it's is through the inside the doctors are full of shit I had to convince my neurologist and I told them I feel drunk and forgetful and I have a water like consistency. I even told them it smells metallic they didn't believe me until I showed them videos of me leaking and I am still not believed and I am at a standstill because they tell me it's all in my head my dad does too they mock me. I even went to an ent they told me they already fixed my nose but what they did didn't fix my nose all it did was make it bigger for me breathe. I am still trying to get my leak fixed I am treated like I am crazy or a hypochondriac or a bum I am I am so close to being diagnosed all I need to do is leak enough fluid and for it to become positive.
Just happened to me that I'm looking too healthy because I was on holiday and caught a bit of sun. Of cause nobody is interested to know about how ill I felt during my holiday.
Hi hun💜 I’d really love to hear anything(have 3 second memory, long story but can’t tell it, cuz well, did u know I have a 3 second memory, etc etc etc….) ok so I need serious self esteem tips and also how I can deal with “pissy” attitude drs that I have no choice but to deal with here in Canada. How to css as lm myself(I have overstimulated vagus situation and ihavehsd vertigo for 5 yrs since my stroke and I’m so sick of feeling so alone, literally so alone I’m having no reason to keep doing this every day. You’re awesome btw Jen, your vids have been something in my tiny bowl I look forward to when I recall I even have a phone. I’m trying to be silly cuz that’s how I was taught but I’m not certain it’s working. Please forgive me if I’m being rude or anything as I absolutely don’t mean to be at all❣️⚕️💜❤️🩹👩🏻🦽😭🖐🏼👍🏼🙃💜gentle safe hugs Jen.
I loved your message. A 3 second memory must get so frustrating. I also love to cope by finding the humor in things; you were not mean! I'll write down your ideas, thank you! 💜
@@MommingwithMigraine Thanks for being so kind and even in your hard times, trying to be there and help us.💜 I was supposed to do therapy today but migraine brain but a stop to that. I pray to cope the next few days. And I hope you’re well as possible too Jen.💜
Sorry to say this, but you need to get it together and get out of the house. You need to be working and using your body. Stop laying around and arguing with doctors, you're wasting your life. Whatever ailments you have, there is no pill for, so you may as well start dealing with it and stop looking for excuses.
You know nothing about how I live my life. What's wasting my life is bonehead comments like this one. Get outta here with the negativity.
PS anyone reading this, please just take a moment for the IRONY that this is the video this comment is on 😅
@@MommingwithMigraine please ignore him as he obviously has no clue what you or any of us go through. He obviously has no clue that you are dealing with it and you still can look for answers. We're not looking for excuses for things rather trying to figure things out and the best way to deal with them. I would never wish what we go through on my worst enemy but if he ever had to go through what we do he'd sing a different tune. This is just part of the criticism we face with invisible illnesses and disabilities is people who have no clue because it's not seen like a broken arm or leg. I hope eventually he realizes how ignorant and wrong he is and changes his attitude.
You do realize that’s exactly what Jen is doing by making these videos right?….. remember that promotion at the beginning? You don’t get one of those by laying around…..
@@EricaDiebold mic drop 🎤 I gotta say, if full-time momming while helping thousands of people every week is wasting my life, imagine how rewarding it would be if I actually did something with it 😳
Unfortunately (and fortunately in many cases) people with chronic illnesses get EXTREMELY good at compensating, accommodating, and acting very "normal" when really we're actually VERY sick.
I have severe Crohn's disease and it is rare for me to go a year without a hospitalization. As a teenager, I was a gymnast and even though I was at my sickest at the time, I'd go see the doctor, he'd do blood work and an exam and tell me I needed to be hospitalized for IV meds and I ALWAYS asked "can we wait until after my gymnastics meet tonight?" I was so sick that I needed to be hospitalized for about a week (and I did this on several occasions over about a 5 year period) and yet I still wanted to, and was able, to compete as a Level 9 (and HS) gymnast.
As a young adult, around 26, I was riding my motorcycle and got pulled over by a police officer. I made some offhand comment about my life being terrible and the officer's response was "well, at least you're healthy" and I laughed and said I wish I was healthy, I was literally in the hospital for 6 days less than a month ago for a severe atypical pneumonia.
It's sad that we constantly have to explain and justify ourselves instead of people just accepting our word when we tell them we're sick or unable to do something.
I often cannot hold it when I need a restroom and I carry a card that says largely across the top (I CAN'T WAIT) and then information about Crohn's and ulcerative colitis. I live in a state with a bathroom access law where even businesses without a public restroom must grant access if requested. The law here actually came about because of a girl with Crohn's. The look of desperation ony face is usually enough for people to say yes if I ask to use the restroom in their business, but it is still no e to have the card to present if necessary.
Healthy people really can't understand what it's like for people with chronic illness but education, communication, and easily available information are the best ways to hopefully help others understand what we're going through and how they should and shouldn't act around people with chronic illnesses.
I think you're channel is an amazing example of that. I was struggling to explain some of the non-headache effects of my migraines to people and your videos have helped tremendously. All we can do is continue to educate and maybe one day, society will understand.
The biggest hugs 💜 My college roomie got dx Crohns when we lived together so I know a very small slice of what that entails. You are such a fighter. That's a great law for people who need it - a great example of the kind of progress we can make if we kindly speak up 🥰
As a chronically ill patient this is a comment I absolutely hate. Oh yeah! I know I look healthy but I know that it's not true. Your channel is the best. Just because you talk about things all patients want to say but don't dare to say. Thank you so much! Hugs from Norway.
I'm so glad that my content resonates with you so you don't feel so alone (although also disappointed by it, of course). You are so, so welcome. I think it makes sense that people can't understand what they've never seen or learned about, so I appreciate you supporting my channel so invisible illness becomes more recognizable. Love, migraine jen
I come to RUclips to feel less alone with my chronic illness symptoms so I really appreciate videos that tell your story. Updates on where you’re at with getting a diagnosis… how’re you’re managing your day to day life… if you’ve found any new management techniques…. anything you’re struggling with…. These are the videos that really help me. Thanks so much for what you’ve done so far xx
Thank you for this. It doesn't help that my disability is both invisible and highly variable. If I don't know what I'll be capable of on a particular day, I can come across as flakey or lazy if I was able to do that same thing previously.
I have seizures and chronic migraines and I feel that what you said at 15:20 I true to some degree... I get silent seizures or petit mal seizures more than I get the typical grand mal. When I have the petit mal seizures people think that I'm faking it to get out of something. I basically look like I'm zoning out so people outside my family dont recognize the difference between seizures, migraines, and me having adhd and not paying attention. Not criticizing anyone in any way just offering my own experience.
It's Migraine Jen but I'll do my best. YES that sounds just like the episodes I was getting from topiramate, so I feel like I get you so much right now (FEEL like, I know I could be wrong). I was told I was having "partial seizures." Like 14 per day. I don't have adhd, but Migraine Jen certainly zones out in a similar way. I wish I could truly get across to others that it's a ridiculous thing to fake, you can't fake something you've never heard of, and how sincerely we also wish it wouldn't happen. But I also completely understand that it's weird, and I DO get why they don't get it... from experience! I was translator for my semi-mute husband for 3 years 'till his surgery, so I get being the able-bodied person around a person with a misdiagnosed and rare disability. I can't blame them for a second. Love, Migraine Jen
I feel panicky every time I go to the doctor for severe pain from endometriosis, because I've never had the severe pain in front of a doctor. I feel like when I tell them "The pain was a 7/8/9/10," people think I'm exaggerating because they see me at a pain level 5 or something where I can mostly function "normally."
Exactly! I'm sorry you go through this.
I have the very same issue and I am with you on the frustration and eye rolls when I describe the worst of it as actual labor. I have several chronic illnesses and it’s exhausting having to work to be believed. Who would choose that??
I am so glad you covered that you are able to sometimes go without your service dog. I am in the process of searching for a dog to owner train for psychiatric assistance, and was feeling the whole "imposter syndrome" of a psych SD. It took many people to tell me I need a service dog to realize that even if I use a SD 80% of the time, I still need a service dog to have quality of life. The 20% I might not have a dog with me does not negate the need. If someone with a guide dog chooses to use a cane or sighted guide sometimes, that does not negate their need for a guide dog.
I almost laughed at the part about some people believing a person would go through the effort to train a dog for PA, buy the gear, train a fake alert, and lay down in public just to cause a scene. Almost - I've seen ambulatory wheelchair users be accused of faking because people assume you must be 100% paralyzed from the waste down to use a wheelchair. Ah yes, all these people faking disabilities because it is such a glamorous life to be denied access and harassed in public.
You are spot on Aaron, cheers 🙌
I’d love to see more service dog and disability related content. I love the mix of educational with the funny parts of chronic illness. Keep making great content ❤️
In reference to videos I like to watch of yours; Personally, I like story times and anecdotal comments that tie into your life. It’s fun to be a fly on the wall of your journey
I really love your day in the life vlogs of how you live with a chronic illness. I also really like the tutorial style educational content you have about different things.
Awesome! Thank you!!
Yes!!! I was that girl that was super fit, skinny and active non-stop. I lost all my weight from my twins BUT 2 years later (41 ish) all my flu like body aches n odd bouts of fatigue came full force. I was diagnosed with Fibro and possible this n that... I went down hill, got on meds, gained 20lbs and managed to in the next few years find a system to help so I was able to homeschool yet I cant work. Despite all I went thru n most knowing what I have, I get the lazy n fat tag. Im just like don't be jealous I got these boobs for free. They are new to me-a compensation gift from God lol. It's a positive way of looking at my weight. 😁😂
I really enjoyed this video Jen, you do a great job of highlighting the pros and cons of having invisible disability. I’ve always said that one of the things I feel the most grateful for about being visually impaired if that it’s taught me to never judge someone by their appearance and to be wary of the fact that so much of society seems hell-bent on doing just that
Why would anyone try to call over someone else's dog (service animal or not) without permission...?
💯
I enjoy all of your content. Well, I usually pass on baby stuff but it's just because I am not really a baby person. If you ask me, just keep up the good work! ♥😄
Thanks for sharing!!
You are such a strong, positive, and wonderful person. Thank you for your honesty and sharing your life with us. Give Buddy some snuggles for me please.
Thankyou for letting me know I'm not alone in this. I often worry that friends will not believe me because they only see me on good days. It's hard because sometimes I feel like people just think I want attention which honestly just makes me feel really sad.
You're absolutely not alone in these feelings 💜 sending strength and spoons!
Your informational videos about chronic illness and service dogs are my favorite, because they relate the most to my own life. But I really enjoy all of your videos, because I like the variety and enjoy learning about new things even if it isn’t applicable to my own life. So I hope you keep doing a little of everything like you are now! I always look forward to checking your channel on Friday night to see what you posted for the week. 😊
Hi Jen! I would actually love to hear more from you as a biochemist. It was really interesting to hear you discuss drug approval and how promotion can sometimes be deceiving!
I have limitations related to PTSD, a balance/vertigo disorder and migraines. Everyday is a challenge but with a lot of effort and planning I can pass as normal at times. Everything you say is truth. I am learning how to train my little service dog. I am coming to terms with bringing my dog because it creates anxiety dealing with the public's reaction. This video really helps me.
I have a number of friends with invisible illnesses, not counting myself. Thanks for spreading the word about invisible illness!
Your video has me thinking about cultural encoding - the way that we embed information in clothes, language, music, food, art, and all of the other elements that we carry with us everywhere. This phenomenon is partly responsible for our assumptions about a person based on what we see. On the other hand, perception can be very different when we are humble, lead with kindness, and assume best intentions. Try though I do, I find that these things are still not reflex for me, but I succeed more than I fail. Probably the most influential aid there is that I possess one of these invisible illnesses, so I know that looks can be deceiving.
I understand I have complex migraines and MS. There are days I can be totally normal and then slide down hill to the point that I can’t get out of bed the next day. I am lucky I have a part time job and they are understanding when I call out or use my cane. But not everyone is so understanding. I have applied for hundreds of jobs and when they have the ADA check box they never call when I go for an interview and have to use a cane I never get a call.
Wishing you the best:) also I appreciate the normalization of mental health!
Never judge a book by its cover. One of the best sayings, but still so woefully inadequate. You can tell people to have compassion, to not judge, to treat each other nicely, but that just doesn't carry enough weight or specificity with it. What you said in "You have no idea what another person is going through, because you aren't them" (paraphrasing) is about the best thing we as friends, parents, advocates, educators can tell people. No one is anyone else. We are not inside another's head. We have no idea what they are going through not just physically, but mentally and emotionally too. Nor do we know how that person perceives themself, their condition, how they feel it effects their life, or how having this condition has shaped their overall perception of the world. Golden rule really stands tall here. Lesson is treat others nicely, and the way you want to be treated. As far as videos are concerned I do like the mix of videos you put together. Some education, a good dose of advocacy, and some DITL Vlog type bits. I think you should stick with the survival guide type videos I think you already explained very well what your conditions are so further educational videos aren't really necessary. Now were on to migraine, or POTS/dysautonomia survival guides, your current go bag contents, family life (especially raising the little ones with your conditions), a DITL Vlog, and if you take a big trip somewhere a trip Vlog. I do think you should throw in more migraine Jen videos too. I know this is very vulnerable, and scary to put yourself out there like that, but it does provide some insight into how a symptomatic day is like for someone. Also it just makes you more relatable. Anytime someone puts themself out there leaving themself vulnerable, and risking that scary portion it really helps others (going through the same or not) to be able to relate to you and makes you even more real. (God I hope that made sense we're getting towards the end of Aura phase here so there may be some spelling errors too bc I can't see my screen very well, oh yeah and my brain has at least temporarily taken a hike somewhere haha)
Please continue with your migraine stories. I truly enjoy them and benefit from them. I have 4 types of migraines and recently lost my job over them. 1) cervicogenic headaches, 2) complicated(complex) migraines, 3) Hemiplegic Migraines, and 4) vestibular migraines. I also have Trigeminal neuralgia disorder. So your videos speak volumes to me. You have already offered both my husband and I fantastic tips in the migraine world. I don’t have a service dog but my dog spots a lot of my migraines in the aura stages as I had to help teach her. I truly do thank you for your time and energy you put into these live videos. I also think it’s fantastic awareness as we need soooo much more!!! 💜
I always learn so much from your videos! As someone without a disability, thanks for the reminder today that you really don't know what others are dealing with. I love all your content (could listen to you 'ramble' all day), but especially the day in the life, family, and of course Buddy content 😊
I like that you share differnt aspects of what you're going through as well as teaching and bringing awareness to those of us with disabilities and chronic illnesses. I've been sharing your videos with friends and family because when the topic get brought up it is usually when I'm having a hard time explaining things and you're better in the videos of explaining how it is. I get chronic daily migraines and being looked into for P.O.T.S and/or Fibro along with brain injuries so this is very much appreciated. I had a faint at church almost 3 weeks ago so I totally get it what you're saying about how it feels to have that happen in public. I'm not scared of it but it is an uneasy feeling to do it in public and scare people when I suddenly have it happen. Many don't know how to respond but everyone seems to have ideas of how to handle things and I've seen in other public places that people crowd you and being critical. So thanks so much for talking about the hiding things from people as I did this a lot more in the beginning of when things started but then they didn't want to believe me so that turned into a major problem for me in the end and I was not taken serious at all and even accused of not really having these problems.
As someone who also gets migraines those are the videos that interest me the most. Love all your videos.
Thanks!! Educational ones or Migraine Jen ones?
@@MommingwithMigraine Both, even the migraine Jen ones are educational and have been learning from both.
I like that you switch it up depending on different things that come up.
That's a fun way to make them, too. Thanks!
Personally as someone who has had many migraine Mary days I'd like to see more of migraine Jen, seeing someone else go through what I myself am often experiencing makes me feel less alone
My hope is another will be up this friday. Thanks for letting me know!
I certainly don't know where I would be if I hadn't have found your channel on here. My migraines started to become a huge problem about 3 years ago and I was forced to quit my job just over 2 years ago when they caused both epilepsy and a stroke to arise within hours. I'm often referred to as 'The Epileptic Guy' and people forget there's a human being underneath who used to be so healthy, helpful and active. I wish I could delete my illnesses like you could a picture on your phone! Sending Spoonie Hugs and Love to you 🥄🤗💜
It’s a scary transition to start using something that makes your illness visible. Mine is mostly “hidden” still but if you look under my pant leg at the ankle you my spot my compression socks occasionally. If you see me on hikes you may see me with poles in order to be able to be on that hike. Even those two things have made me feel self conscious of them when I first started using them.
Dont mind what you says others do... just take your and energy better spent makeing the best of what you can. I dont worry about what others think. I know all about my service dog and what hes does for me.
I know what you mean, I am there. I even lost my family because of it, they don't understand and think I am making it up. Oh and my service dog is not an random breed so that makes it worse to understand but I am happy with this breed and love them! Greetings from the Netherlands
I 100% relate to this. One of my “downfalls” is I have many issues with my spine such as slipping disk and deteriorating vertebras and more. We first found out when I was 7 even though I had pain from birth and I was put in my first back brace. I wear my brace on and off now and I’m 17. The reason I don’t wear it full time now is because the custom brace I need is so insanely expensive and I’ve grown out of my previous one. So since I’m not wearing my brace and the only thing you can tell is I walk kinda awkward sometimes when I’m at work or something and need to sit down because I’m in unbearable pain people laugh and think it’s just a joke. What they see is a typical healthy 17 year old girl but what they don’t see is the doctors appointments, constant conversations of surgery, fracturing my vertebras over and over, sleepless painful nights, migraines from those painful sleepless nights and the list just goes on. But the kids from high school who saw me in my last brace know me and “that one cripple girl” and it’s just all frustrating.
This type of video is honestly my favorite one to watch. I love the way you lay things out. Sometimes they are really educational for me and sometimes they are really nice to show my loved ones when I dont know how to explain something.
Hey Jan, I just wanted to let you know that I watch your videos every Friday. I find the content really interesting, especially since I deal with my own disability. Watching your videos helps me to temporarily forget that I have a disability. Thanks for all that you do, keep up the good work.
That is so great to hear! I'm glad my content gives you a little break from everything you're fighting through 💜
I certainly didn't understand complex migraines until viewing your content.
People *will* be ignorant about what is happening to us. Even doctors, most often. They make assumptions; it's much easier to breeze through life assuming than to keep an open mind and seek facts before judging.
A logical thing for a disabled person to do is to become less sensitive to opinions and snap judgments of others. Actually, this is good advice for everyone. Don't like my pink hair? So what. You're right, we're all living a crazy story. People who form opinions and judgments without access to relevant information are misinformed and even foolish. But it's only a problem when their judgments impede us.
I think it might be true that women are more highly attuned to the opinions and judgments of others than are men, on average. High emotional IQ, better social skills, the gender that attracts, all of that behavioral psychology crap. (It really is crap, psychology isn't a science, but psychology does have a virtue: it labels phenomena so we have words to discuss them. It has no other virtues that I can see.) If there is any truth to those labels, then it might be tougher for women, on average, to base self-esteem on the self and not on the opinions of others. I don't know. I haven't walked in those shoes.
Hard or easy, I invite you to regard yourself primarily by the light of your own virtues and accomplishments, errors and mistakes, kindnesses and cruelties.
Taken in that light, your self-esteem should be doing just fine, methinks. Invisible disability, visible disability, water off a duck's back. Since most peoples' assumptions are wrong, there's no reason to concern yourself with them unless/until they are actively obstructing you from doing what you want to do. Then you take out your skunkwater pistol, set it on stun, and dowse them with it.
Cheers!
Definitely keeping an imaginary skunk gun in my back pocket for the next time I meet someone difficult 😂
Very well written and said. I have similar migraines as Jen does, complicated migraines. They are awful! But what Jen is doing is brave and powerful. She is also bringing awareness to the forefront which is clearly what we need. 💜
"It's only a problem when their judgements impede us" really struck me. You're right, that most days I value myself, and I'm able to ignore the incorrect judgements. For those other times, I lean on kind people like you to help light up the shadows that are cast by the soon-to-be-skunk-sprayed humans. Cheers, Urgelt. [Edited for a small typo]
@@MommingwithMigraine well said 🤗
Migraine Jen strikes again! 😂 In a way, that's so funny that you don't remember doing that video.
Right?! I catch myself off guard so much 😄😄😄
I'm really excited to see that one!
This was a great video. I love all the topics. Service dog info and training is a top fave as I train my 5 month old that alerts so well since 3 months old. I love migraine Jenn, I have migraines that are insane, allergy series, because I am literally allergic to everything and veggies as a vegan is crazy, plus if you have seizure convulsions content with POTS, I'm here for that for sure. It's wild to have someone that matches you in so many ways. You are great and I just love all you do. So blessed by these videos and happy to not be alone. Keep up the great work!!!!
I really appreciate your videos. As others have said it makes me feel not so alone, and reminds me that I'm NOT crazy for wanting REAL answers!
Unfortunately I am coming to understand what you mean about people thinking I'm fine. I am newly diagnosed Neurocardiogenic Syncope and my family doesn't know what to do with me. I was visiting my parents 2 days ago and had some glittering diamond-type vision disturbance (vision disturbances being a precursor to syncope for me) so I laid down real quick because I can usually stop a faint that way. They don't realize because I don't tell them that so much of what I do is to prevent fainting in front of them because it would mortify me. I am an organist at church and have been having bad dreams of passing out in front of everyone...that would be so embarrassing.
A lot of what you say resonates, thank you.
I know a lot of ppl mean well with their comments but my heart is already stressed out when it goes to 120-140 every time I stand up so how would exercise help me at this point... Some people are ignorant and some just downright obtuse and call a dog over that is obviously not their own 😖
Hey I just thought I'd throw this out there for both perhaps this Dr can help you and see if this video lines up with anything. My hypothesis is that cervical instability is also related to the collagen issues from EDS.
ruclips.net/video/4ECcS0JKqH8/видео.html
My favourite are the story time and service dog videos, but I look forward to all your uploads! If you’re looking for ideas, I’d love to hear you talk more about microbiology and other things you love
Hi sweet Jen! You also do a wonderful job of maintaining your home and taking care of your baby so to the outside world it can seem like you are very well put together when you are having a bad symptom day. I love the comment about workplace discrimination... so true. Every job I have ever gotten has not known about my illness until after I was hired! Can we get an update on how you are doing since giving birth? How have your symptoms changed since becoming a mom? Appreciate you and your channel so much. Hugs from Tennessee!
My favorite are your migraine and motherhood videos:) I’m here for all of them though!!!
Wow can’t believe people can be so horrible in your comments sorry. I get encouragement from your shared struggle. It is true we can’t know another’s pain. I started watching for the migraine videos but I also like to see your day to day as well. Thank you for being brave enough to say what must be said.
My friend had serious back injury for a while. She was having a good day and we went to Costco. She got one of the motorized carts because she knew that she could get tired quickly, and could have problems. She got lots of negative stares, and looks because she looked like a healthy young person. They stopped when she got uncomfortable, and she put her back brace on (showing them was disabled) . So unfair!
Thanks for sharing your story!
I can't believe how common stories like this are 😕 Give your friend a high five from me. Do what you gotta do!!!
If it's any consolation you are not alone.
Always enjoy learning more and more from your videos
So nice of you
I completely agree!
I have PTSD from school and PT and for so long I've felt like a weirdo because I've only heard of PTSD being from war and I don't know anyone else who has the same PTSD as me but people around me reassure me that anyone can get PTSD from anything that they have a negative feeling about but are still put through and that it can be any level and I've been through general counciling and mentioned it but back then i didnt know it was actually PTSD etc but now I'm looking for a councilor that does everything except general counciling and to hear that you have PTSD with showering does make me feel even less of a wierdo so thanks.
I really identify a lot with most things you said. I'm legally blind, so I hit both ends of the spectrum so to speak. In known environments I get judges for "faking" and "not looking disabled", especially with my guide dog in training with me because I don't look like I would need one to people. I can function without him and with just my cane, but that drainss my energy so much more because then I have to actively feel AND look where I'm going, whereas with my dog at my side I can just follow him and he will take me around any obstacles and warn me about any changes in elevation. But other times if I say I'm legally blind... People start babying me, people forget that they can talk to ME and start asking questions to anyone around me, and I get all these questions! "Oh you can't see well? Have you tried glasses?" "How many fingers am I holding up?" "Can you see colours?" Yes, IDGAF and yes! But neither of that is anyone else's business! I try to be polite and understanding to the fact that people don't understand, but I end up grinding my teeth SO often! At the same time I'm glad my disability isn't clearly visible because I notice the very belittling way for example people in wheelchairs or with walkers get treated. But hey, people like you remind me that it's worth to keep on trying :)
I also love all your content! I learn so much and come away happy. I resonate most with your motherhood content, as a new mom myself. But I highly value your migraine and service dog content too! The more I know, the better I can advocate for people around me!
I look forward every Friday to your video.....I completely understand about having invisible disability bc I do...Thank you for talking on this subject & God Bless you!!!
The first video of yours that I watched was one on elimination communication. You explained it so well with real examples. I wish I had known about it 30 years ago when I had babies. I passed your video on to a mama to be. Since that video I have come back for ditl and videos about your service dog. I find it so interesting that dogs can be so in tune with their handlers needs.
I have dealt with chronic migraine almost 20 years along with a few other chronic illnesses. The absolute worst damage done was by professionals who do not believe me. WHO WOULD CHOOSE THIS?
Your story has been fascinating for me - and I’ve used your fainting prevention tips recently. There are things about me - like brain fog and extreme clumsiness - that infuriate me because I can’t seem to fix the problem. Again, eye rolls from doctor’s and frustration from those around me when forgetting simple things.
You asked about content - I have always had extreme mom guilt for missing out on a lot of my daughter’s childhood, fear she will resent me, and more guilt for being unable to be the mom she deserves. Does that ever come up for you? Maybe you have an amazing village, but it’s a big issue for me so I figured might as well ask. Be well. 💖
I’ve recently loved seeing the videos with your daughter the most, because you’re both so joyful and sweet together ❤️ and also because the totally non-standard technique(s) you use (eg. Really just the baby toilet time one) seem so useful and interesting! Thinking I may try that when I have kids one day.
Awwwww that's that's sweet. Thank you 💜
I second this ❤️
I would love to have a video describing different kinds of migraine. From I’ve been told and learned, I personally experience migraine attacks from cervical misalignment and compressed nerves in my neck (resulting from a long ago car accident ). This results in my skull feeling two sizes too small and crushing my brain from the tension in my scalp. Additionally, from the car accident, I have TMJD and chewing can cause a misalignment in my C1/C2 and it throws of everything down the whole spine. Along with causing scalp tension.
While I realize this is not typical migraine, I have the common symptoms of sensitivity to sound and light, vomiting, and unbearable pain. This is NOT just a bad headache. It’s debilitating and I am nonfunctional when it’s happening. And then there’s the hangover to deal with.
Any video regard “non traditional “ migraine would be of value to me. 💖
I have Spina Bifida and use a chair. This has been all of my life so it is cultural for me. But I also have migraine and Chiari - both invisible and more “disabling”. So they are both health conditions for me. My opinion only. :)
Absolutely! Thanks for sharing your story, I hope you're doing well
I love all your content but the day in the life/vlog style content is my favorite!
Good to know! Thanks!
Thank you for this video 🙏 my husband left most doctors( I am on 17th) don’t believe that after minor car accident I have so many complications. I just realized when you mentioned that you don’t faint upfront other people… I was wondering about it myself and now absolutely it makes sense for me. I have very hard time to schedule POTS test and get proper diagnosis it’s mentally very challenging
I have seen people follow a pattern for content. Week 1 Buddy/service dog, week 2 migraine info, week 3 P.O.T.S, week 4... Something like this may help you to focus your content if you are unsure of the direction. I haven't found a video yet on preventative meds/procedures for migraine. I know you did the meds after on set, but not sure about the other. Thanks for everything you share. 😊
I like all of the videos. My favorite ones are of Migraine Jen.
I am in the same boat I also changed my diet a lot as well in hopes that it can improve my symtomps enough to get diagnosed on time I have had this for the longest time. I would say this was happening the most in middle school.
I can relate to this so much. I forget to comment sometimes but I am watching and appreciate you! I hadn’t thought of the pros of having invisible illness before, that is such a good point.
Thanks for your support!!! Glad I could shed a silver lining 🥰
Thx for mentioning ptsd I am currently fighting mine
You got it! 🙌 I hope you're able to work through what you're fighting 💜
@@MommingwithMigraine thx I am getting the help I need
Excellent, so important. Please don't hesitate to keep updating me on your journey. I'll be rooting for you!
I really enjoy the Migraine Jen vids (although, so sorry that you have to deal with that), but also I loved seeing how you lit up talking about science in your 48 hour flat test video. It wouldn't be keeping with the theme of things, but maybe a vid on what you did at work or something sciency and educational that you're passionate about.
Thank you for making these videos, it makes me feel lees alone
I personally subscribed for the service dog videos (but I've been enjoying all of them ;) )
I love all the videos. It shows you are a well rounded individual.
Awwww thank you friend 💓
I'd love to hear about your hobbies, and how you balance them with everything going on in your life.
CNY paws for therapy dogs. It's a good thing to know about therapy dogs.
Hi Jen! Thanks for the video :-) I always look for content that makes me understand what the world looks like from a different point of view. So I am most interested in the videos that show (the showing is more fun than the telling, but probably also more work) how you deal with migraine, pots, etc.
I wish more people understood invisible illnesses, I once had a random person ask me for a doctors certificate when leaving school because of a migraine. (like I was carrying one on me at all times anyways lol)
This touches close, not for me as I still don't have so disabled because of my migraines, but my dad with a heart condition. He had a myocardial infarction many years ago, and then tryple bypass surgery 10 years later... and people where like "but he looks so healty, so good" cause he always look tanned... but only us, knowing him well, could notice the extra shinniness in his eyes, and the slight darkness below them when he did too much effort to stay awake and active. For me I remind people don't caring too much if they understand or not, That I have low paint migraines but that they affect my memory, and my language, and some other mental proccesess. If they want to understand, ok, if they don't their problem. But I think is important for people to know that a migraine is not only "a headache". And sometimes I explaine your migraine simptoms, when someone is curious, and a friend's ones too to help understand that "the headache" is one part of it, if it's a strong acute pain is disabling of course, but is not all of it and youc an't compare it with "oh I also have headaches"...
Thank you, this video reminded me to call disability services at my school
You´re too young/beautiful/normal/whatever to be disabled and not working. Yeah, that´s kind of what I feel too, sadly this doesn´t change that I am. I´m sorry that you go through this and I really hope society starts to realize that we all don´t act as if we´re disabled, we actually try to fit in and appear to be normal. I´ve never understood why people don´t think about us not wanting to faint/seize/have flashbacks/whatever symptom it might be because we don´t feel safe in this vulnerable state in public especially because of how people behave. I do everything to prevent an episode outside and I´m definitely not leaving my home on bad days. I´ve also had a boyfriend shaming me for stealing his time after two years because he didn´t believe my health struggles were as serious as I´ve told him right from the start.
Thank you for raising awareness!
Ugh, people only see me when I have spoons. Only visit my family, while I have have the energy to visit. Pissy because I only stay a couple hours, But I usually almost can't make it home. Oh me? I have Fibromyalgia and serve back pain. I take public transportation, which takes most of my spoons. And Ageism? I'll be 60yrs old in a couple of months....Oh everyone at 60 has aches and pains. No no they don't, not to the extent I do. Did I mention, it can take me 2 or 3 days to recovery from my visit. SPOONS! I need to find a Spoon cleaner, so my spoons aren't always dirty in the dishwasher.
* I love you have multi-topic and sometimes rants! I just enjoy you! It's like a phone call from a friend. Oh course a bit more baby updates would be great, but thats the grandmother in me😁
Thank youuu.
I have POTS, I don't faint but I go presyncope a lot and I think how i handle presyncope keeps me from fainting. I get pretty low blood pressure.
I also have Orthastatic intolerance and Inappropriate sinus tachycardia.
Then because of the POTS I also have MCAS. And doctors are looking into hEDS.
I can relate so much to this.
I love watching your service dog videos personally karma if you think she should make more of them like this comment!
It’s not a disability but I definitely feel your sentiment about your disability becoming a marker for who you are. I’m trans and most of the time I wish that it wasn’t necessary for anyone who knows me to know (even my own family) because once someone finds out I’m trans my defining characteristic becomes me being trans instead of who I am as a person and it makes me really uncomfortable.
I absolutely hate the line "but your too young or too healthy to be having problems/a disability". No one is too young to have anything. Also, appearing to be healthy like you said has it's pros and cons. Yes I may look healthy and people won't know I have a problem until my knee dislocates and I fall. And unless I mention that or the fact I have back and neck problems or even migraines. No one has a clue because I look healthy. Can we as a society just stop invalidating other people's experiences. Just because you don't see it doesn't make it any less real. Stop being a Doubting Thomas. Thank you for your videos, I like your variety. These have been really helpful with my migraine journey so far and mine is fairly new almost a year of migraines, and I'm still trying to find answers to them, as well as some other symptoms I've been experiencing.
1000x yes you're right!! The invalidation is harmful. Thanks for the kind words
@@MommingwithMigraine You're welcome
I love how you bring awareness ❤️ I suffer with migraines since i was 15. Now at 28 I know some of the triggers, but I found that the lighting at work brings on migraines with worsening aura recently. I would appreciate any tips on what could I do about that. The first 3-4 hours are okay, then I take my hour brake outside in natural light and within 30-45 minutes of going back to work I get a migraine, most of times it comes with vertigo and feeling sick but recently I have cognitive issues too.
One thing I love is my scar from the wreck.
It's about half my back length against my spine toward the bottom.
Or when I wear my AFO brace for my drop foot...(otherwise I wear combat boots to keep it up)
When someone starts fighting me, I can either lift my pants leg- or the bottom of my shirt in the back.....
Hahaha.
The looks I've gotten once they realize I'm broken and in pieces beneath the skin.
And not once have I had someone brave enough to treat me wrongly for my service dog while I'm in my wheelchair.
I've always counted myself lucky that I a physical scar....
And I don't want anyone else to have to think like that because of how random people behave!
That's why I've been so pro-active locally.
No one else should have to go through what I did the first six months of having a service dog
I was so scared of people after the memory loss.
Took six months for me to regain enough memories and get fed up with peoples behavior....
And a RUclipsr mentioned if they did it to me, who else would they do this to?
So I got mean. I used every single thing I could tell.about them against them and in less than five minutes I had a gal that regularly sought me out to bully me in stores if she saw me.... yeah I made her cry and run away.
And then I turned on the store and started pulling managers.
I grew fangs was the joke with my family.
They are tempered now- I've chilled alot.
But wow.
I used to get so upset and it fueled me to curb how people behaved.
Managers have seen me at my worst.
Gosh. It's been a while since I shared the rage of it all.
XD
Hahaha my church had a few that didn't think I pass out for real- till I started training my VBS partner teacher how to handle saph.... who listens to no one else.
Just how to remove her from her stay and how to put her back if I do pass out.
Last year I was with a teacher that knew my story and works well with dogs and saph listened to her decently.
I'm updating all their info for if I ever pass out..
And the first list attempt had the office lady's eyes bug out.
Now she gives me extra hugs and is quick to defend me from some of the members that just don't understand.
They are starting to though.
Very much appreciated this video!
Every time you talked about Zion national park, my service dog Zion perked up 😅
I know that this is very different from having a service dog but for school I have an accommodation to bring and use my own personal computer In class and before the pandemic I was the only one with a computer and people who "knew" me and saw me with a computer would act differently around me than thoughs who didn't see the computer and same with people who got to know me without the computer and then saw the computer would treat me differently and talk slower and use smaller words there were very few people who would still treat me as an equal if they knew I had the computer
Very Well Said!!!!
Remember you are not alone I have a csf leak and other illnesses but I keep getting ingnored. I am going to end up dead or killed because I am not fully there
I am also disabled but I don't have a service dog I have cerebral palsy and use a chair people treat me like that all the time especially at restaurant they refuse to fill my drink I have to have somebody else ask them it is discriminating
Thank you for this video it’s perfect I have a visible disability and then I also have multiple invisible disabilities that includes migraines and possibly CSF leak problems and I also currently I’m getting checked also for white matter disease in more detail as to what’s going on with MRIs and as far as the CSF I’m getting an MRI for a fluid study test and also I’m trying to get enough fluid to come out from my nose to be able to give a sample and I have not been successful it goes to the back of my throat and it does taste horrible like salt and metallic so I’m having two MRIs done on the same day coming up on the 11th and the other one is a brain study for the white matter degradation
I’m too familiar with the problem, my dad has a LMC (chronic myeloid leukemia) and unfortunately his treatment has cause him a lot of sides effects like loosing completely some nerves in his arms and legs and he has almost gone blind but if you look at him he seems just a regular man and since he still has the force to go to work and have an almost normal life people just assume that he is okay he just need to take a pill it’s not that big deal, or when he was going blind and he didn’t know that it was caused by his chemo and he was really scared his boss and some of his colleagues told him that he just needed to change his glasses. So people can be really mean sometimes
Gosh I'm so sorry, he doesn't deserve to be treated meanly for something he can't control!
I believe you there are people with 20 years old with csf leaks I am one of them
My problem is they treat me disabled but say Im normal when I actually need the help. Drives me crazy. Accept I have a disability and move on.
I have low-support needs autism (can be invisible as I don't fit the narrative of what autism loos like). Pro is being able to turn it off and . Con is when masking doesn't work in a situation and I come across as either attention seeking, creating drama, or just an asshole. 😅
Different types of migraines. More lifestyle adaptations and hacks to make daily life easier while chronically ill. Also how do you cope mentally with all that's going on physically?
These are huge, huge topics and I think I've put them off because I want to do them justice. Thank you for the suggestions. I'm excited to get more into mental health
Thanks for the weekly video, Jen!! Odd question... have you ever seen a chiropractor for migraines? I just went to one for the first time yesterday (SI joint issues) and he felt my neck and asked "do you get bad headaches?" and i said "well i get migraines" to which he replied "yeah you definitely have a migraine neck"....I'm so confused, i have no clue what that means or how the hell he could tell that from just feeling my neck and I was in shock so of course I didn't ask.... just wondering if you've ever experienced anything like that
Yes, I see a chiropractor for maintenance due to torticollis in my neck 💜
They told me and my mom that I am heathy it's is through the inside the doctors are full of shit I had to convince my neurologist and I told them I feel drunk and forgetful and I have a water like consistency. I even told them it smells metallic they didn't believe me until I showed them videos of me leaking and I am still not believed and I am at a standstill because they tell me it's all in my head my dad does too they mock me. I even went to an ent they told me they already fixed my nose but what they did didn't fix my nose all it did was make it bigger for me breathe. I am still trying to get my leak fixed I am treated like I am crazy or a hypochondriac or a bum I am I am so close to being diagnosed all I need to do is leak enough fluid and for it to become positive.
Same problem with Max my SD and me people don’t believe I need him.
I wish the oppersite of no one seeing I depression and a insane list of chronic illness and no one cares.
Just happened to me that I'm looking too healthy because I was on holiday and caught a bit of sun. Of cause nobody is interested to know about how ill I felt during my holiday.
I hope you're treated better in the future 💜
@@MommingwithMigraine Thank you.♥️
Hi hun💜 I’d really love to hear anything(have 3 second memory, long story but can’t tell it, cuz well, did u know I have a 3 second memory, etc etc etc….) ok so I need serious self esteem tips and also how I can deal with “pissy” attitude drs that I have no choice but to deal with here in Canada. How to css as lm myself(I have overstimulated vagus situation and ihavehsd vertigo for 5 yrs since my stroke and I’m so sick of feeling so alone, literally so alone I’m having no reason to keep doing this every day.
You’re awesome btw Jen, your vids have been something in my tiny bowl I look forward to when I recall I even have a phone.
I’m trying to be silly cuz that’s how I was taught but I’m not certain it’s working. Please forgive me if I’m being rude or anything as I absolutely don’t mean to be at all❣️⚕️💜❤️🩹👩🏻🦽😭🖐🏼👍🏼🙃💜gentle safe hugs Jen.
I loved your message. A 3 second memory must get so frustrating. I also love to cope by finding the humor in things; you were not mean! I'll write down your ideas, thank you! 💜
@@MommingwithMigraine
Thanks for being so kind and even in your hard times, trying to be there and help us.💜 I was supposed to do therapy today but migraine brain but a stop to that.
I pray to cope the next few days.
And I hope you’re well as possible too Jen.💜