Finding the right doctor is a daunting task- especially when you have POTS. I think it is important to change the way we view doctors when you have a condition that the average doctor knows so little about. Instead of going to a doctor and taking their way as law, it is best to find a doctor and treat your appointment like an interview or a first date. Some doctors hurt more than they help and you deserve better. Dump them.
Like most people with POTS, I have encountered a ton of doctors that have made my life much harder. I’ve been told that my deadly blood clot was the stomach flu. I’ve been told that my POTS wouldn’t affect me if I stopped seeing myself as sick. I’ve also had doctors tell me it is my fault I’m unhealthy because I’m not trying hard enough. I’ve been called crazy, a liar, hysterical, and a drug- seeking junkie.
I’ve had doctors chastise me for refusing to take a medicine that says it should never be taken if you have had a blood clot before (I have). I have had doctors get mad at me for not following a diet that wasn’t backed by science and that I physically couldn’t follow with my gastroparesis.
For so long I let these doctors dictate my life. I believed them over actual POTS experts and over myself. My friends and family doubted me and my suffering because of what these doctors said. I lost out on so much support. It got to the point where I constantly doubted myself. I blamed myself for all my symptoms. I believed that the problem was me- even when I did everything the doctors told me to.
At one point I was eating 12g of salt, wearing compression constantly, drinking 3L of water, practicing biofeedback, taking all my recommended meds (even when I had terrible side effects), and working out for at least a half hour every single day. It helped some, but I was still fainting, getting infections constantly, in so much pain, constantly dizzy, always foggy, and was getting terrible daily migraines.
Because my doctors had given me, my family, and my friends the idea that I had 100% control of my condition and making it better I got to the point where I started to hate myself. I was so hard on myself every time my POTS flared because I had been told so many times that it was my fault.
This expectation that I needed to will myself better irreparably harmed both how I saw myself and my relationships with the people who should have been supporting me through the worst part of my life.
Now I am in a different place and far more happy. Instead of taking their word as law, I keep seeing the great doctors and dump the rest. I understand that lifestyle changes help, but there are many parts of my condition I can’t control. I see that I don’t have to be around people who make my life harder.
I have only seen two doctors who knew more about POTS than I do with all the research I’ve had to do. It has been 8 years and I’ve seen hundreds. I realize that I am the only expert on how I feel. Instead of feeling like I have to prove my symptoms to a doctor who might not believe me I now expect them to prove themselves to me. I don’t expect every doctor to be an expert or even know that much about POTS. Now I expect them to be able to really listen to me and the willingness to look up and research the things they don’t know.
If the doctor isn’t willing to learn or believe my symptoms I move on. It is frustrating to see more doctors, but absolutely worth it to not have my symptoms belittled every time I have to have a doctors appointment.
So my advice is to stop trying to make terrible doctors listen. Stop blaming yourself for things you cannot control. Just do the best you can and find doctors who see that as enough. The problem is them, not you. At least in the US, you are paying for their service. You wouldn’t tip a waiter who was cruel to you. You wouldn’t go back to a hairdresser who didn’t listen and gave you a buzzcut when you wanted a trim. So why go back to terrible doctors (*unless you have to for some other reason)?
Fire them! Dump them! It is so satisfying. Tell them why. It might help patients after you. Don’t be afraid to be assertive and advocate for yourself and your condition. Don’t let them push you into second-guessing how hard you are working for your health. Don’t let them fool you into blaming yourself for what you cannot control.
*This advice obviously doesn’t apply to people in extremely small towns or who are only able to get to one doctor. That is a whole different struggle.