“Postural Orthostatic Tachycardia Syndrome.” The words felt foreign on my tongue the first time I attempted to sound them out. Over the years I never quite knew how to describe it when people asked. As I continued to learn all the little facets of POTS, I referred to my condition as an autoimmune disorder, a heart condition, a blood pressure problem, each only really describing one aspect of it. To condense something that had overtaken my life so completely almost felt like an insult, but it was much more bearable than the questions that would follow. Truthfully, I don’t mind talking about it. I’m thrilled to have people ask me direct questions rather than making assumptions. However, the pity in their eyes quickly grows draining. Over time it seemed to become a side effect of the disorder itself, and just as I developed a protocol for a plummeting blood pressure or racing heart, I now have a standard answer.
“POTS is a form of dysautonomia, a disorder of the autonomic nervous system, essentially meaning the ‘autopilot’ of my body, which normally regulates internal functions such as heart rate, blood pressure, digestion, and the temperature gets disrupted, causing my body to send or receive incorrect signals from itself. While there are multiple subsets, mine is chronic and progressive, but most importantly, it does not control my life.” When I started adding that last part to the statement, the look of surprise would often flash across peoples’ faces, and I didn’t blame them. Having a debilitating condition used to control almost everything about me, not only physically, but mentally as well. I let it affect how I saw myself, carried myself, valued myself. Often, I rationalized that it was normal for ambition, motivation, and just the desire to get out of bed to drastically drop when I couldn’t even get out of bed physically. Honestly, there are still many days where this mindset overwhelms me. With any debilitating condition, attempting to plan your future can feel like a monumental task when you aren’t sure how you’ll feel in a year, let alone a week, a day, or an hour.
But six years later I am attempting to live my life from out under the shadow of my condition, and I wanted to maybe provide a little comfort to those in a similar position and attempt to educate those who aren’t. While this is just my experience, I hope that anyone out there with a chronic or debilitating condition can relate. In my case, as is the case for several chronic diseases, there are often only subtle or even a complete lack of signs that I am anything other than a healthy twenty-one-year-old college student, until I have an episode. Dysautonomia International states that “while POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.”
All this to say, my subset of dysautonomia is chronic and progressive. Meaning that for the foreseeable future, no matter how much weight I gain or lose, how good of shape I’m in, how well I eat, or how many medications I’m on, there still are going to be plenty of bad days. Days where I am weak and powerless, and it feels as if all of the work I had put in never mattered at all. It can be extremely hard to get out of bed in the morning and try when failure is not only expected but guaranteed. But the philosophy I’ve adopted recently has been that for every bad day, there will be a good, and hopefully then some. Hopefully, the more I try the more good days there will be. Although my day, my health, my life is not guaranteed, I have to keep trying in hopes of the life I can have on my good days. This segmented existence is certainly not ideal, and has caused me many tears and sleepless nights, but it has also taught me to look at the world in a new way. To expect and accept the bad, to deal with it, and to move through it always looking ahead towards what can be.
For the friends and family of those of us living like this, we hate the unpredictability of this all as much as you do. I’m sure that it is incredibly frustrating to have to change or cancel plans and parties and vacations at the last minute because of something that doesn’t even affect you. But please understand that the uncertainty of our lives does not stop at canceled plans, but follows us day in and day out. Personally, if I could change the way it affects my family, I would in a heartbeat, but for now, I can only offer a promise to never stop trying to improve. One day I hope to start slowly pouring spontaneity back into my life, that maybe just this one morning I can skip my routine for a day trip to the beach or a late-night road trip. And yes, it kills me to know that no matter how much I exercise, eat right, medicate, or meditate that there will always be bad days. Days where it seems as if all the work was for nothing. But in hopes of the days where I do not have to weigh the pros and cons of climbing a single flight of stairs, I get out of bed, and I try.
To anyone living with a debilitating illness or condition just waiting for days like those, while there is a risk of failure in even the smallest attempt at improvement, no attempt at all brings us no closer. There will be days when we have to pause and catch our breath, but what matters is continuing after. Because I see you. Not your diagnosis, or your medication, or your treatment, but I see your strengths, your desires, and your dreams. Regardless of what you are living with, you are living, and the world is a better place for it.
There is currently no cure for any form of dysautonomia. Please donate to Dysautonomia International or the POTS Research Fund to help further this life changing research.