When I first got sick, my daily symptoms were a living hell. Throw in doctors who think you’re crazy because they can’t find anything wrong with you and you soon realize that rock bottom has a basement. Surviving the initial shock and trauma of developing POTS takes everything out of you. You’re at your weakest moment but have to muster up the strength to fight to be heard, fight to be believed, and fight to get treatment. It's infuriating, it's frustrating, and it's just not fair.
It’s pretty bad that experiencing trauma at the hands of doctors who vow to “do no harm” has become some sort of initiating process when it comes to receiving an accurate diagnosis of POTS.
My mom and I figured out that I had POTS, EDS, MCAD, a thyroid condition, and CFS before any other doctor. That doesn't mean I diagnosed myself, I just knew I had it before receiving an accurate diagnosis. When my mom and I developed this theory, we started joining POTS Facebook support groups and the people int these groups were honestly lifesavers for me.
During my first few hospital visits and doctor appointments, we brought up the possibility of POTS only to be told "oh maybe" and have the doctor walk away (obviously not really knowing what it is), "your blood pressure doesn't drop enough for it to be POTS" (which isn't true, a change in BP isn't diagnostic criteria for POTS), or "your symptoms don't sound like POTS, maybe you should have a psyc evaluation" (when I started developing seizures). It is a horrific experience to have your health in the hands of doctors who don't know, nor really care to figure out, what's wrong with you.
Every time I received an accurate diagnosis for my condition, I didn't have to convince the doctor though. We would just happen to come across a doctor who knew what POTS was. It was the biggest relief to not have to fight anymore.
People often ask me how to bring up a topic with their doctor, how to deal with disappointing doctor appointments, and how to get access to a certain treatment, so that's what this blog post will be about. But first, I'm going to answer the last question by saying that every single medication I'm currently on, my doctor put me on and I didn't ask to be put on it. I did ask Dr. Raj if I could increase my dose of Modafinil and he said yes, but that's it. Besides that, I asked to try Florinef by the doctor who diagnosed me with POTS in 2014 because from what I was misled to believe at the time from what I had read, I thought Florinef was the answer. It definitely wasn't the answer for me.
What I have asked for, however, was to go to cardiac rehab, for my doctor to e-mail Dr. Levine and get the POTS exercise protocol, for a referral to see Dr. Raj (and other types of specialists), and if I could do the rare saline infusion at my Vancouver cardiologist's office when I need it to get out of a flare (I used to do it through a doctor who moved). There might be something else that I'm forgetting but I can't recall.
In the past, I wrote a blog post called "When your doctor won't listen" which briefly explains how I handled the doctor-patient relationship when I first got sick.
When I first got sick, I was jumped from doctor to doctor (in Canada you need a referral to see a specialist, and the wait list is usually around 6 months, but I've had appointments in as early as a month and as late as 2 years) with each appointment slowly crushing my hope. I remember placing all my hope in upcoming appointments thinking "maybe this will be the one" only to be minimized, dismissed, and leaving more fearful than when I arrived. I remember how hopeful I was when my family doctor referred me to my first cardiologist. The week after developing POTS symptoms I was on a beta-blocker because the doctors realized my heart rate was 140 lying down and 180-200 standing. In the 2-3 months it took to get into see my cardiologist, my mom and I had realized that I probably had POTS. My mom (who was spending all her time at home taking care of me at this point) dedicated hours and hours of each day to researching about POTS and then providing me with the Spark Notes version. We were prepared, we were excited, we were hopeful, we were naive.
When I saw this cardiologist he told me:
1. Stop getting x-rays because I have made matters worse by radiation exposure (I had a few x-rays due to chest pain, none requested by me)
2. I will probably grow out of it
3. When we asked about POTS, he said that my blood pressure doesn't drop low enough for it to be POTS (this isn't diagnostic criteria at all) and that POTS is just a diagnosis doctors give when they don't know what else is going on. Oh, and that there's nothing doctors can do to treat POTS (all of this is false).
I left there feeling confused and devastated. However, I was still naive and thought that I just needed to find the right doctor who knew what was wrong with me and then everything would be fine! Boy was I wrong.
The biggest problem I had wasn't that doctors didn't believe me. My mom and I were highly educated on the topics at hand and I think that gained us some credibility in appointments. My issue was that doctors kept thinking whatever I had was not within their expertise to treat. Neurologists thought "well if this IS POTS then POTS isn't a neurological condition," and Cardiologists thinking "well if this IS POTS then POTS isn't a cardiac condition" (both being false, both Cardiologists and Neurologists can treat POTS even though POTS isn't an abnormality in the structure of the heart). I'd wait months and months just to be turned away with nothing.
I specifically remember an appointment I had with a specialist (I don't even remember which specialist) after my 1-month hospital stay in 2014 where I received an accurate POTS diagnosis. After this traumatic hospital stay, in which I developed medical PTSD, I developed severe muscle atrophy. I was now anxious (I never had been prior), depressed (I never had been prior), terrified, bedridden, and with no plan. I felt hopeless. Then I went into this specialist's appointment with the tiniest bit of hope thinking "okay well now that I have a diagnosis, someone will be able to help me." When the appointment proved useless, I remember screaming at my mom the whole ride home (my poor mom) and literally banging my fist until it bruised on the side of the car door while we were driving. It was a 45 minute car ride and when I got home, my mom went inside, and I stayed in the car hyperventilating because I was still so upset. When I finally went inside I closed my bedroom door, threw all my clothes (this took days to recover as I was still so weak), and screamed at the top of my lungs until I finally broke down and cried and cried and cried.
I haven't had a break down this intense since, but I have had minor versions as a result of medical disappointments. People often ask me how to deal with these, and every time I hear that question my heart breaks for them because I know just how heartbreaking this situation can be. Some things that help for me though are:
1. Get angry in a healthy way. Blast music, but don't raise your voice at your loved ones. Process it. Feel it, don't suppress it because you will implode. It hurts because it matters.
2. Reach out to someone and don't be alone.
3. Once you've processed it, even if you're still feeling hopeless, make a plan. This isn't your end. It wasn't my end. I thought it was, I thought I'd never improve, but I have and so will you. Allow this anger to be the fire that motivates you.
I now have amazing doctors who I trust and respect and no longer have to fight to be heard. In the past, when I had to "fight to be heard" it was with doctors who didn't know what POTS and EDS were. So I had to say stuff like "I don't want to try a new beta-blocker, last time I tried a new one I had multiple seizures a day and I don't think the goal should be to just reduce my heart rate because it doesn't improve my symptoms as much as you think it does to reduce my HR" or "here's an article that shows that you do not have to have a drop in BP to have POTS". But nowadays, I don't tell my doctors what to do, but they suggest a treatment option and I can confidently bring up any concerns I have with it and get their opinion.
At the end of the day, what I've learned is:
1. That I have to be an educated patient. I have to gain credibility in order to be respected by my doctors. I talk a lot about how to do this in my old blog post mentioned above.
2. Having doctors who know more about my conditions than I do is essential. If you don’t have this, I’d highly recommend you do a quick Facebook search for “POTS doctors ___your state/city/province/country__”. There are a couple Facebook groups specifically dedicated to this. If you can’t find one, join the main “POTS” closed Facebook support group and ask about doctors in your area. This will be the quickest and most efficient way to find info and avoid the traumatic search for a POTS-literate doctor. “Dysautonomia International” also has a part on their website where you can look for POTS doctors.
3. I also have to remember at the end of the day that although some of these doctors know more about my conditions than I do, I know more about my body and personal experience than they do. So I have to take responsibility for my health and speak up when I am uncomfortable about a suggestion of theirs, ask for clarification when needed, and ask for proof behind a statement of theirs.
Having the right team of doctors is worth the fight. It’s an awful fight, one that we shouldn’t need to do, but unfortunately in this day and age it’s something we have to do. So I’ve learned to say “no,” I’ve learned to speak with confidence, I’ve learned to assert my patient rights, and I’ve learned to be persistent. I’ve also learned that at the end of the day, doctors are only humans trying to do a job. Our lives depend on them but they’re just flawed, real humans who haven’t been properly educated on or illness. At the end of the day, no one’s going to care about my health as much as I do, so I need to take responsibility and ownership for this fight instead of being a victim of a doctor’s ignorance.