When Medicine Fails and Stops Caring About Your Chronic Illness

in 2013 I was diagnosed with an almost unheard of but very prevalent medical condition known as POTS. Postural orthostatic tachycardia syndrome (POTS) is a dysfunction of the autonomic nervous system that I like to describe as your body going haywire.

The autonomic branch of the nervous system dominates the functions that you never have to think about doing: breathing, swallowing, your heart beating, blood pressure, body temperature, digestion, and blood flow. There are two systems that work against one another. The sympathetic and parasympathetic each manage each of the processes above and work in opposite ways. These systems are poorly regulated and result in a hot mess of a nervous system.

The biggest problem with POTS has to do with blood flow. The human body typically works to keep blood flow moving at a steady rate through the whole body regardless of your position in relation to gravity. Some people don’t have this luxury and their blood vessels are “relaxed” which means that when you stand up, the blood isn’t going to move a whole lot. This can lead to a whole host of issues every time you stand up. Really. Every. Time.

Because blood flow is such a problem the body that’s affected by this has to compensate for the lack of blood that the heart and brain are getting. Standing up can increase your heart rate by a lot (like by 50 beats per minute), rapidly lower your blood pressure and can cause some other super fun things like not being able to see or move.

Someone with POTS can really end up with any symptom you can think of. Nausea, pain, exercise intolerance, dehydration, dizziness, migraines, fainting, and evidently other disorders may accompany this lovely problem.

It’s been over five years since I was diagnosed with POTS by my first cardiologist and I write this from a point of frustration that in the last half of a decade, which is eons in the world of medical research, it seems as if we have barely made any progress with this condition. Is it a disease? A condition? a cluster of syndromes? I don’t know. Does anyone know? (the answer to this is also no)

I’ve become very used to handling this issue. It used to be my whole life. People my age didn’t want to deal with me. It was too much for them. Why did I have no other qualities other than “being sick”? I grew and learned how to have a life outside of being sick and learned how to pretend like it didn’t exist. And I’m thankful for the people who taught me that because they grew with me too, and now I don’t have to choose if I’m the “sick girl” or the friend.

I don’t see when I stand up. Think about how many times a day you stand up to do anything. It’s a lot, right? Think about blacking out every time you have to do that. My heart rate goes as fast as one should while the body is running when I stand up. I get dizzy and have the sudden urge to sleep a few times a day. I fall asleep in class. I trip and fall on everything. I call into work sick every few weeks and I miss at least one class every week. I’m usually doing great if I only miss one class.

What I need someone to take from this long-winded rant is that in the past 5 years medicine has failed the millions of people who have POTS. There are people doing great with it, and that’s great. I don’t feel like I’ve “lost” a battle, but I’m tired. The team of doctors who specialized in POTS and made me a regular human again no longer exists. The funding for research has been stripped from the major hospitals that had the resources and nobody really wants to become a specialist in a medical condition that has absolutely no “textbook case”.

October is Dysautonomia awareness month. POTS is a form of dysautonomia and I want to be able to say one day, before I turn 30, that hospitals know how to treat people with these conditions. One doctor. That’s all I’m asking for. I’m not counting on much this year, but maybe a year from now I can at least say that we didn’t keep moving backward.