Oh wow I wish I had found ypur channel sooner! I have quite a long story as well but I figured out years ago that I have porphyria, which is really hard to diagnose. I just recently got a diagnosis of dystonia, need to be evaluated for a movement disorder, and I may also be having seizures. And may have the trifecta of MCAS/EDS/POTS. Any or all of these condtions can be misunderstood, misinterpreted as psychogenic or simply overlooked. Besides that, I have been diagnosed with asthma, copd, gastroparesis, migraines, degenerative disc disease, scioliosis, ADHD, and early menopause. My symptoms are so complicated and changing I can't even explain them to my doctors. Most don't really seem to believe me, and I have been through a ton of invalidation and gaslighting. I have been told everything from maybe you are just dehydrated or need new shoes, to being accused of trying to commit disability fraud. Several have tried to attribute my symptoms to anxiety (one even called it "deep seated anxiety."). I have chronis sinus tachycardia, usually while standing or walking, or after eating, or with exposure to light. I wore a heart monitor for 3 weeks. The cardiologist treated me with contempt, saying, you triggered the alert on your heart monitor 85 times. Do you have anxiety? I said no. He just stared at me and kept repeating the question different ways, not wanting to accept no for an answer. He also never seemed to believe that my mother had a heart attack at 42 - several doctors have questioned this as if I must be mistaken, or making ut up. In this case she was sitting right there with me and told the cardiologist, but he brushed it off. We have 4 generations of heart problems through maternal lineage, but he had no interest whatsoever....what kind of cardiologist does even want to know your family history? The first time I had a stress test, he was convinced I had a heart problem, but after he ran more tests said everything was normal. My mother's heart also seemed totally normal before she had a heart attack. She had a collapsed artery, so I really wonder if we have vascular EDS. The cardiologist also didn't care that other doctors wanted me to be evaluated for dysautonomia. Basically all he would evaluate or treat is a literal defect of the heart. I am not sure he would even know how to evaluate that properly! I had no confidence at all in his opinion. He also lied to me about the reason why my insurance didn't approve an MRI. When I called him out on that, he dismissed me from his practice. I am glad to be done with him and move on to another cardiology practice. But another doctor wrote in my records that I was "very upset" about being dismissed from the cardiology practice, which is bizarre because I barely mentioned it and was not upset at all. I think those two doctors are buddies and probably gossipped about me. The other doctor also asked me if I had any history of anxiety or depression. I could tell so many stories! I found out one of my doctors has a prior felony conviction. Another one misdiagnosed me. I think probably a third of all doctors are idiots and should be run out of practice! They may get by okay on autopilot with the patients who have more common problems, but when they see a zebra or a unicorn they are absolutely clueless! I never wanted to be like this, I wish I could just live my life and work and not ever have to deal with the medical system at all!! But I must have won the lottery on weird genetic problems. I can relate to your story so much and have been through this so many times. To everyone out there going through similar experiences, you are not alone! You know your body best, and sometimes a doctor really doesn't know enough to evaluate you. They can have basic information wrong or misunderstand how to interpret test results. Or sometimes they just have a personal bias that gets in the way if seeing things clearly.
Love you Becky! After 7.5 years of this my health system has called to say there's nothing more they can do for me. Which is interesting. Because aside from a diagnosis and ignoring my to wheelchair status they haven't done anything to begin with.
I saw a gi doctor that told me everything was normal with me after having a endoscopy and colonoscopy. When I started doing research I came across eds and gastroparesis. The doctor told me eds is just being stretchy and there’s no point in getting a diagnosis bc there isn’t a cure. Then he told me gastroparesis isn’t real. On my last appointment he told me everything is anxiety and I need a new therapist. I went to another gi doctor and completely blew me off until I had a recent admission in September. They found out I have sma syndrome and gastroparesis🙄. It only took me to drop my weight into the 90s and throwing up for years. I’ve been on NJ tube feeds since September and I’m already back to 110lbs. Ps I did get my eds diagnosis in July and the genetics doctor said I am extremely hyermobile and she 100% believes the pain I am in.
WOW! I'm so sorry you went through that Kayla. It's shocking that some of these medical professionals clearly have no clue what's going on. I'm really glad that you got the answers you deserve (albeit far later than you should). So glad you've got a new doc that knows the situation. Sending you gentle Zebra hugs :D
I take metoprolol and clonidine to help with POTS like symptoms ... medical gaslighting is a epidemic , specially for those with complex or nervous system related diseases. Effects the body top to bottom, brain, heart, stomach, skin, joints; almost everything
please help. "m being gaslit by my sons doctor. He has no strenght in his legs in often in a wheelchair , often falls and is as he"s to weak to stand and cries with the pain in his joints but because his blood tests came back as "normal" they wont do anyhting for him despite my pleading. last week they offered to refer him to a phychologist. l still find it hard to believe.
Hi there, really sorry to hear about your son. I've definitely been there myself. Has your son been diagnosed with any specifically to date? I would say a good starting point would be to push for a referral to see a rheumatologist, as they specifically deal with disorders involving joints (and joint pain), muscles and ligaments. They would be able to do more investigative tests to find a source of his pain. I also did as much reading as possible to see what other people with similar symptoms were saying and what drs they were recommending in my area. I saw a geneticist following my rheumatology appointment, and they diagnosed me with Ehlers Danlos Syndrome (a condition which can affect the joints). I really hope that you find someone who is compassionate and willing to listen to you. You have a right to a second opinion and to be heard. Sending you love
I am a victim of medical gaslighting in the broken UK. I’m sofa ridden with a severe sore area inside my upper abdomen. Gone from a runner to someone who can’t walk far.
@@leschatsmusicale I was diagnosed with dysautonomia/autonomic dysfunction in May 2021 but the mystery still remains why I can feel a sore throbbing pulsation in my upper left diaphragm. I can’t expand my left lung fully. 4 years since this started and I had nearly 3 years of ‘you’re imagining your symptoms’! Disgusting vile doctors.
@@Chris_1983 it has been 4 years for me too. Going to one specialist after another. Please look into MALS or nutcracker syndrome. I hope you don't have either of those but it could explain your pain. It's also common that they cause dysautonomia and can coincide with EDS or other connective tissue disorders. I have gastroparesis and after I eat my food just sits there under my ribcage with a throbbing sensation for hours. I am trying to get in to see a neurogastroenterologist.
@@leschatsmusicale where are you from? I know a good one in London but you may have to see him privately if you can afford to or have private health cover?
So glad to see you and so sorry about that crummy Doctor. My daughter goes through times of questioning herself because of them. Don't stop looking for doctors! We are in Oregon in the US and have finally found a doctor to treat Kari's gastroperesis. Unfortunately we have to get the meds from Canada since insurance doesn't cover the one made here and it would be almost $500 a month. Ugh! Good luck to you. 🙏🏻💘🙏🏻
It's hard to find the right caregiver and it might be better to find a same-sex doctor as they can relate better. A younger doctor is less likely to be bombastic.
When you were telling your story I think you said something that made me think anxiety for heart rate. But you should know how you were feeling. Also the heart rate should have been high before. Not sure you would make it rise. If somehow you were scared of when it rose sure. But would you really be that anxious about it. It is a very calm environment. I had the test and no heart raise, but I did have blood pooling so whatever you make of that. Oh and I get gaslighting all the time from co-workers about work or doctors. Doctors will say it is psychological or old age or everybody has that or they have that too and things like that when it is not true.
It's hard to find the right caregiver and it might be better to find a same-sex doctor as they can relate better. A younger doctor is less likely to be bombastic.
![Invisible Disabilities, Chronic Pain, & Medical Gaslighting [CC]](http://i.ytimg.com/vi/SG4jHBxSpm4/mqdefault.jpg)
My doctor likes saying most things is anxiety. I keep having to remind that I have eds.
Get a new doctor! You deserve someone that takes your pain seriously
Oh wow I wish I had found ypur channel sooner! I have quite a long story as well but I figured out years ago that I have porphyria, which is really hard to diagnose. I just recently got a diagnosis of dystonia, need to be evaluated for a movement disorder, and I may also be having seizures. And may have the trifecta of MCAS/EDS/POTS. Any or all of these condtions can be misunderstood, misinterpreted as psychogenic or simply overlooked. Besides that, I have been diagnosed with asthma, copd, gastroparesis, migraines, degenerative disc disease, scioliosis, ADHD, and early menopause. My symptoms are so complicated and changing I can't even explain them to my doctors. Most don't really seem to believe me, and I have been through a ton of invalidation and gaslighting. I have been told everything from maybe you are just dehydrated or need new shoes, to being accused of trying to commit disability fraud. Several have tried to attribute my symptoms to anxiety (one even called it "deep seated anxiety."). I have chronis sinus tachycardia, usually while standing or walking, or after eating, or with exposure to light. I wore a heart monitor for 3 weeks. The cardiologist treated me with contempt, saying, you triggered the alert on your heart monitor 85 times. Do you have anxiety? I said no. He just stared at me and kept repeating the question different ways, not wanting to accept no for an answer. He also never seemed to believe that my mother had a heart attack at 42 - several doctors have questioned this as if I must be mistaken, or making ut up. In this case she was sitting right there with me and told the cardiologist, but he brushed it off. We have 4 generations of heart problems through maternal lineage, but he had no interest whatsoever....what kind of cardiologist does even want to know your family history? The first time I had a stress test, he was convinced I had a heart problem, but after he ran more tests said everything was normal. My mother's heart also seemed totally normal before she had a heart attack. She had a collapsed artery, so I really wonder if we have vascular EDS. The cardiologist also didn't care that other doctors wanted me to be evaluated for dysautonomia. Basically all he would evaluate or treat is a literal defect of the heart. I am not sure he would even know how to evaluate that properly! I had no confidence at all in his opinion. He also lied to me about the reason why my insurance didn't approve an MRI. When I called him out on that, he dismissed me from his practice. I am glad to be done with him and move on to another cardiology practice. But another doctor wrote in my records that I was "very upset" about being dismissed from the cardiology practice, which is bizarre because I barely mentioned it and was not upset at all. I think those two doctors are buddies and probably gossipped about me. The other doctor also asked me if I had any history of anxiety or depression. I could tell so many stories! I found out one of my doctors has a prior felony conviction. Another one misdiagnosed me. I think probably a third of all doctors are idiots and should be run out of practice! They may get by okay on autopilot with the patients who have more common problems, but when they see a zebra or a unicorn they are absolutely clueless! I never wanted to be like this, I wish I could just live my life and work and not ever have to deal with the medical system at all!! But I must have won the lottery on weird genetic problems. I can relate to your story so much and have been through this so many times. To everyone out there going through similar experiences, you are not alone! You know your body best, and sometimes a doctor really doesn't know enough to evaluate you. They can have basic information wrong or misunderstand how to interpret test results. Or sometimes they just have a personal bias that gets in the way if seeing things clearly.
Love you Becky! After 7.5 years of this my health system has called to say there's nothing more they can do for me. Which is interesting. Because aside from a diagnosis and ignoring my to wheelchair status they haven't done anything to begin with.
I saw a gi doctor that told me everything was normal with me after having a endoscopy and colonoscopy. When I started doing research I came across eds and gastroparesis. The doctor told me eds is just being stretchy and there’s no point in getting a diagnosis bc there isn’t a cure. Then he told me gastroparesis isn’t real. On my last appointment he told me everything is anxiety and I need a new therapist. I went to another gi doctor and completely blew me off until I had a recent admission in September. They found out I have sma syndrome and gastroparesis🙄. It only took me to drop my weight into the 90s and throwing up for years. I’ve been on NJ tube feeds since September and I’m already back to 110lbs. Ps I did get my eds diagnosis in July and the genetics doctor said I am extremely hyermobile and she 100% believes the pain I am in.
WOW! I'm so sorry you went through that Kayla. It's shocking that some of these medical professionals clearly have no clue what's going on. I'm really glad that you got the answers you deserve (albeit far later than you should). So glad you've got a new doc that knows the situation. Sending you gentle Zebra hugs :D
I take metoprolol and clonidine to help with POTS like symptoms ... medical gaslighting is a epidemic , specially for those with complex or nervous system related diseases. Effects the body top to bottom, brain, heart, stomach, skin, joints; almost everything
please help. "m being gaslit by my sons doctor. He has no strenght in his legs in often in a wheelchair , often falls and is as he"s to weak to stand and cries with the pain in his joints but because his blood tests came back as "normal" they wont do anyhting for him despite my pleading. last week they offered to refer him to a phychologist. l still find it hard to believe.
Hi there, really sorry to hear about your son. I've definitely been there myself.
Has your son been diagnosed with any specifically to date?
I would say a good starting point would be to push for a referral to see a rheumatologist, as they specifically deal with disorders involving joints (and joint pain), muscles and ligaments. They would be able to do more investigative tests to find a source of his pain.
I also did as much reading as possible to see what other people with similar symptoms were saying and what drs they were recommending in my area.
I saw a geneticist following my rheumatology appointment, and they diagnosed me with Ehlers Danlos Syndrome (a condition which can affect the joints).
I really hope that you find someone who is compassionate and willing to listen to you. You have a right to a second opinion and to be heard.
Sending you love
I am a victim of medical gaslighting in the broken UK. I’m sofa ridden with a severe sore area inside my upper abdomen. Gone from a runner to someone who can’t walk far.
I am so sorry. How are you doing now? What you said made me think of MALS. I hope you get the help you need and truly deserve.
@@leschatsmusicale I was diagnosed with dysautonomia/autonomic dysfunction in May 2021 but the mystery still remains why I can feel a sore throbbing pulsation in my upper left diaphragm. I can’t expand my left lung fully. 4 years since this started and I had nearly 3 years of ‘you’re imagining your symptoms’! Disgusting vile doctors.
@@Chris_1983 it has been 4 years for me too. Going to one specialist after another. Please look into MALS or nutcracker syndrome. I hope you don't have either of those but it could explain your pain. It's also common that they cause dysautonomia and can coincide with EDS or other connective tissue disorders. I have gastroparesis and after I eat my food just sits there under my ribcage with a throbbing sensation for hours. I am trying to get in to see a neurogastroenterologist.
@@leschatsmusicale where are you from? I know a good one in London but you may have to see him privately if you can afford to or have private health cover?
So glad to see you and so sorry about that crummy Doctor. My daughter goes through times of questioning herself because of them. Don't stop looking for doctors! We are in Oregon in the US and have finally found a doctor to treat Kari's gastroperesis. Unfortunately we have to get the meds from Canada since insurance doesn't cover the one made here and it would be almost $500 a month. Ugh! Good luck to you. 🙏🏻💘🙏🏻
Oh Julie, I'm so happy to hear you've found a doctor for Kari's gastroparesis!
It's hard to find the right caregiver and it might be better to find a same-sex doctor as they can relate better. A younger doctor is less likely to be bombastic.
When you were telling your story I think you said something that made me think anxiety for heart rate. But you should know how you were feeling. Also the heart rate should have been high before. Not sure you would make it rise. If somehow you were scared of when it rose sure. But would you really be that anxious about it. It is a very calm environment.
I had the test and no heart raise, but I did have blood pooling so whatever you make of that.
Oh and I get gaslighting all the time from co-workers about work or doctors. Doctors will say it is psychological or old age or everybody has that or they have that too and things like that when it is not true.
Me
It's hard to find the right caregiver and it might be better to find a same-sex doctor as they can relate better. A younger doctor is less likely to be bombastic.