Feeling like a fake with dysautonomia symptoms

mack7315 have you have tilt table test? I was diagnosed with the sweat test. Which is include in that test.

I’m the same I think I’m in denial still after two years of having Long Covid/POTS. I always have good and bad days/weeks and I never know when they’re coming! Exercise has been so hard for me as well and especially grieving what I used to be able to do but I keep on having hope and doing a little bit at a time ❤️ I have fainting spells as well and a resting heart rate above 100 so I’m getting used to figuring out what my body is capable of and giving myself some grace

I recently went into a cardiologist who took 2 minutes to flippantly look through my chart and tell me nothing was wrong with me despite being diagnosed by a dysautonomia specialist and geneticist. He saved me away like I was making things up. I left there feeling defeated and questioning why it is so hard to get doctors to listen. I understand what you are going through. I just wanted to scream it is not normal to blackout while driving. Losing that independence has been hard.

I feel that way all the time. It's especially worse when I have good days, where I'm able to function decently well, it's like, "Oh, well! Maybe it's not that bad actually and it's going away and I'll be able to do everything I want when I want in no time!" And then I overuse energy I don't have and crash and burn, repeat cycle infinitely lol I also relate with doctors and testing. My old cardiologist dismissed my concerns that her lowering my med dosage was causing worsening fatigue because my "test results/data don't show that". Wtf does that mean??? Like clearly I'm experiencing it whether or not all of my labs, scans, and monitors come back normal (which they all do, consistently, very annoying and unhelpful). I've had multiple doctors now look at the bp and symptom log I keep and go, "Huh... Your symptoms don't seem related to your blood pressure at all, that's strange". Not very motivating, that's for sure. I've been called an anomaly a few times It's hard to diagnose things that can't be explained or seen through medical testing. It's even harder to get others and yourself to believe in their existence/validity. Just know that your symptoms are very real because they are effecting you and that's all you need to know. Brush those other thoughts away like an annoying bug because they're just internalized ableism trying to make you doubt yourself and your understanding of your body. Doctors and other people can worsen these thoughts for sure, especially with medical gaslighting, but try and stay strong. You're chronically ill and can't do some things that healthy people can, and that's okay. Just because you know and respect your limits (leading to better well being and quality of life) doesn't mean you aren't still sick, just that you're getting better at managing it