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Christine's avatar

I'm 63 years old. I was diagnosed less than 10 years ago when I ended up being referred to a cardiologist because of a pulmonary embolism. In reviewing my extensive medical issues he came to the conclusion. His explanation,testing and tratment has focused primarily on my low blood pressure. I have compression stockings and take salt tablets. How long did my POTS go undiagnosed? When I was in grade school (1960's) we would have annual "check ups" with the school nurse. I have never forgotten the embarrassment when she was trying to take my pulse/blood pressure and screamed at the rest of the kids to BE QUIET!! because she couldn't "find" it (and forever after I was labeled as "zombie", "vampire" "dead girl" by my classmates.) MY first memory of feinting was when I was 12, though my grandmother says it happened even earlier. In school, I was often accused of "faking" my various health complaints to get attention or to get out of class. In my 20's I began to believe I was crazy after being accused of being a hypochondriac so often. Every decade, it seems I got another diagnosis of something that previously didn't have a label. But Thanks to your series I'm realizing that many of them (GAD, Fibromyalgia?, GERD, Vertigo, Light Sensitivity, chronic dehydration) all fall under Dysautonomia. Something that no physician has ever mentioned to me to this day! And I'm wondering which Dr I should discuss this with to get my POTS diagnosis expanded so that ALL my specialists will "GET IT" 🙄 I'm glad that the science and medical community is finally STARTING to piece it all together. I pray that further research into identification and treatment is being done (sooner rather than later) and mass education of the medical community is rolled out so NO ONE ELSE has to go through the psychological trauma of missed diagnosis for as long as most of us have. I can't explain how emotional I am to finally have validation. I can't begin to thank you enough!!!

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Paul-Gabriel's avatar

This one rings some bells.

Thanks for laying it all out for us. It's good to learn, and you make excellent and important points.

I don't have POTS or dysautonomia, but as an early fibromyalgia patient, I've had to deal with some of the same obstacles and issues in getting diagnosis and treatment. Thankfully, I've never had to do a tilt table. That sounds excruciating. I'm sorry for what you had to experience to get a diagnosis and be taken seriously. Personally, my heart would be fine, but with the fibro nerve pain I have to shift around a lot just so the pain levels don't build up too much in any one spot.

I wish society was better about invisible illness. I remember my sister had knee surgery when she was in high school. From the outside, she looked fine. But she was recovering from then-experimental surgery and couldn't put weight on her leg for any substantial period. And yet people would see what looked like a young healthy girl sitting on the bus and pressure her to give up her seat, with no idea of what was going on beneath the surface. That kind of thing happens way too much. "Why do you need a cab to go a couple of blocks?" "Why don't you give up your seat on the bus?" "Do you really need the elevator?" "Aren't you just being lazy?" It's all just ableism, and we need more education and awareness around invisible illnesses.

We also need people to be less afraid of taking the measures they need to protect themselves. I had so much pain and fatigue I could hardly walk. I memorized routes across the kitchen. Where are the handholds? Where can I push off to give myself a boost to get across the gap where there is nothing to hold on to? Where do I need to aim so I launch myself at a handhold without risking crashing into something? I did that for a couple of years before realizing that I really should be walking with a cane. I was in my 20s. I looked healthy from the outside. Wouldn't people judge me for using a cane? Wouldn't they think I was faking it, or looking for attention? You young fool. You need this. And no one cares that you're using it. And the fact that you are using it shows them that there's something going on, so most of them will actually be more understanding, not less. And the ones who do judge you for using an assistive device that you very much need? They're the ones who are lacking.

(Side note: My aunt invited me to have dinner at the clubhouse restaurant where she lived. I barely managed to walk across the room. Exhausted, tottering, leaning on my cane. My head was down the whole time because I could barely see straight. Woozy and short of breath, I collapsed into the chair and paused to rest. An elderly man got up from his table, walked up to me, and told me it was inappropriate for me to be wearing a hat indoors and I needed to take it off. I decided to bite my tongue for my aunt's sake. I didn't want to cause her problems with her neighbors. I was also still woozy and short of breath. I would have taken the hat off once I'd collected myself. But all I can think is... If that guy sees a disabled person wobbling across the room and decides that his top priority is to interrupt his meal so he can chide me for a minor breach of decorum.... I truly, from the bottom of my heart, pity him and the small bitter life he must lead. Besides, I started wearing hats everywhere because I lost my hair in elementary school and I was really sensitive about it. Even after I got used to being bald, with the fibromyalgia hypersensitivity, I very much needed the hat to protect my eyes from overwhelming light levels. It's also a disability aid in a way. But he never stopped to consider that I might have medical needs.)

But what I really appreciate is you calling out medical gaslighting. "It's just anxiety. It's all in your head. Push through it. Cope with it. Cope with whatever in your life is scaring you." No, no. It's that my immune system totally screwed up my nervous system and the tests you've run so far aren't able to show that. I get that doctors have to deal with a lot of patients who really are worried over nothing. And some things really do have simple minor fixes. But too often, doctors just dismiss patient concerns and real symptoms that really are a sign of something deeper going on that really does need to be addressed. They also suffer from tunnel vision. They know their speciality. They completely forget anything outside of it. They don't see the body as a whole. They forget how things interact. And... if the problem doesn't fall within what they're able to detect for their speciality, then they pass the buck. It's some other doctor's problem. Good luck to you.

I know how frustrating it is for doctors who truly want to help their patients, but who have to work within the limits of human capability and current technology. There's so much we don't know and so much we can't fix, for all the amazing improvements we've had over the last century. I have had many doctors tell me over the years that there's nothing more they can do, that they don't know how to help me, that they wished they could do more. I think knowing that my dad is a doctor helped them open up about that. I saw how much it hurt them to have dedicated their lives to learning how to heal people and then just being confronted with a problem they don't have the tools to address.

But too often they simply don't listen. They tell you it's all in your head. They see that the test results are normal, so instead of looking for another test, they gaslight you and dismiss you. When I was 16, my parents took me to CHOP (world-class pediatric specialty hospital in Philly) and the doctor listened to me and my parents and sent me home with two new medications. He took my parents aside to tell them about it. A few days into it, when it was clear it wasn't helping, Mom, wracked with guilt, tearfully confessed that they were placebos. He made her lie to me. Because he thought I was faking it and just needed something to believe in. Even though we'd only come to him after I'd been to a dozen other doctors and tried I don't even remember how many real medications.

The tests show normal, so it must be in your head. How many people have been actively harmed by that? Not just left untreated, but told to ignore their symptoms and their bodies' limits? And shamed for being ill? Infuriating.

I did have one doctor apologize to me once.

The first doctor to correctly diagnose my fibromyalgia. He was the one who developed the test that was used in the 90s (before it was replaced with better ones). He told me the good news. He knew what was happening and if I followed his protocols he guaranteed I'd be feeling better in a matter of months. I did everything he said. I didn't get better. He told me to my face I was lying. He said if I wasn't getting better it could only mean I wasn't doing what he'd ordered, and he couldn't treat a patient who wasn't honest with him. He screamed at me to get out and never come back.

A few years later, I did see him again. After he'd talked to my parents. (He knew them socially, since Dad was a professional colleague.) He sincerely apologized to me. He said he was wrong to do that, and he shouldn't have taken his frustration out on me, and he knew better. And he tried again to help me with what he'd learned in the intervening years.

But, for all the dozens and dozens of doctors I've seen... Neurologists, cardiologists, pediatricians, rheumatologists, sleep specialists, endocrinologists, and I don't even remember what else. Specialists. People in specialty hospitals. In half a dozen different states. Sometimes traveling hundreds of miles for an appointment. ... With all that, he was the only one who ever apologized for anything other than not being able to be more helpful.

He was not, however, the only one who yelled at me, who dismissed me, who accused me of lying or faking it. We traveled 300 miles to see a specialist in Boston, who listened to me lay out everything I'd been through and just ask for his help, and got mad at me, walked me down the hall to the cancer ward, showed me a patient of his who was dying of leukemia, and told me to leave and not come back until I had real problems. I saw an endocrinology researcher who said I don't have the genetic markers he'd identified, so clearly I couldn't be diabetic and if I'd just stop taking insulin my body would realize it needed to make its own. (Thankfully, I knew better than to listen to that claptrap.) I saw him again years later for something else, and he didn't apologize.

Medical science has limits. The tests can only show a limited amount of information, and you have to know what to look for. I get that doctors are pressured to find ways to help and sometimes they just can't. But they need to be honest with us. To step off the pedestal and work with us. Believe us. Listen to us. And say "I'll keep looking. We'll try something else. I'll talk it over with some people who may know more." I've had that happen a few times, and it's been encouraging. Refreshing. So much more helpful and supportive.

I really wish doctors were taught to work with patients instead of handing down judgements and decrees. I also wish they remembered that zebras do exist, even if they are rare and sometimes hard to spot.

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