My Life with POTS
When people think of moments that completely change the course of someone’s life, they mostly think of that scene in pretty much every ABC Family movie where the girl is driving home late at night, singing along to the radio when all of a sudden, a deer charges onto the road and forces her to swerve, crash into a tree, and wake up in the hospital only to discover she has no memory of who she is/can’t walk/is blind and will never achieve her dream of being an artist.
Recently, I discovered that in real life, moments that completely change the course of someone’s life are much more subtle. It could be that you walk into the doctor’s office, feeling like you have strep and wanting some antibiotics to knock it out, and you walk out 45 minutes later with a debilitating, chronic disorder that you’ve never heard of, in shock and unable to form a single thought, yet somehow still be hyper-aware that your life has completely changed.
If that sounds like an incredibly specific example that’s not really just an example, that’s because (SPOILER ALAERT) it’s not really just an example. Stay tuned for the full story.
During my freshman year at American University, I managed to get strep four times. Apparently the medication that I was put on the kill the virus didn’t work, so the strep kept resurfacing. However, since each time I took it the medication would make me feel better, I didn’t know that the virus hadn’t been killed. After the fourth time I had strep, my immune system had weakened so much that a condition known as Postural Orthostatic Tachycardia Syndrome (POTS) entered my system and took hold.
POTS is characterized by dysfunction of the autonomic nervous system. Specifically, my body is unable to regulate blood flow well, which means that gravity is pretty much controlling where the blood in my body goes. When I stand up (or sit upright), the blood sinks down to my feet and legs. Then, because my brain isn’t getting enough blood, my heart starts beating incredibly fast (within about 1 minute, it goes from 70 beats per minute to 160), and I start to get very dizzy and pass out in about 10 minutes if I don’t lay down. Even if I don’t push myself to the point of passing out, every time I sit up or stand, I use so much energy that it exhausts me for the rest of the day. The way I see it, every time I wake up in the morning, I have 5 “golden tickets”. As the day progresses, whenever I stand or sit upright for too long, I lose one of the tickets and get weaker. When I run out of tickets, I’m done for the day, no matter what time it is—I can’t do much more than lie in bed.
Since the autonomic nervous system controls more than just blood flow (it controls the functioning of all organs that operate involuntarily), there are many more symptoms that go along with having POTS. These include extreme fatigue and exhaustion, brain fog (You know how when you have the flu, you feel really spacey and dizzy and like you’re living in a Vaseline-covered bubble? And it takes a long time to process things that are happening around you, and you’re head feels so heavy you just want to lie down and close your eyes? That’s brain fog.), episodes where I feel like I can’t breathe, and lapses in memory. There are also cognitive impairments, including problems with word retrieval, burnout, decreased mental stamina, impaired concentration, and sleep disorders.
There is no cure for POTS. There are medicines that can help mitigate the symptoms but it is very hard to find the right combination of medicines to do that (I’ve been working with a specialist all year and we’re still experimenting), especially because POTS is very individualized and each patient must find the exact combination that will work for them. POTS is incredibly random and unpredictable—without warning, I can go from an upswing where I find I’m able to push myself to read a book, take a walk, or go out to dinner to a downswing where it’s hard for me to even get out of bed. There is a small chance that people who get POTS as teenagers will grow out of it or at least improve as they get older, but chances are it’s going to be a lifelong struggle. For more information, go to www.dinet.org.
Before POTS, my life had been very typical, and very reflective of my middle-class, suburban upbringing. I’ve never doubted the fact that I would one day graduate from college. I’ve never doubted that I would study abroad. I’ve never doubted that I would be able to chase the job of my dreams, whatever it may be. I’ve never doubted that I could have my crazy 20′s, where I’m living in a crappy apartment with a bunch of friends, going out and experiencing things that would one day turn into stories I would do my best to hide from my kids.
Now, I doubt that I’ll be able to do any of those things. I don’t know if I’ll be able to graduate college—most of the people I know who have POTS were not able to graduate from a four-year, full-time institution like AU. I struggle in all my classes (something I’ve never experienced before), especially with attendance, deadlines, group work, projects that take us off-campus, and finding time when I’m not too weak to do work. Besides the logistical things I must now figure out are the emotional and social problems that come with having an unknown, invisible disorder in a place filled with people who, for the most part, don’t know me or my situation. I feel judged when I have to take the elevator up one floor (I can’t walk up stairs anymore); I feel awkward when I use two chairs in class (one so I can put my feet up—I definitely can’t sit up straight for an hour and fifteen minutes). To strangers, I am that weird kid who is constantly taking her pulse; to casual acquaintances and group project members I am the flake who never comes to class or project meetings; to professors I’m that girl with the crazy-sounding disability.
I certainly no longer plan on studying abroad, which could quite possibly be one the biggest disappointments that goes along with having POTS. My plan to travel to England and be that person who comes back with a fake British accent and a really sexy foreign boyfriend is no longer going to happen. My crazy 20′s are not going to happen either.
My career options are now limited not by my abilities and interests, but my physical capabilities. Anything without stable pay, job security, and no travel is out. Anything that involves standing or any sort of physical labor is out. Anything that involves a ton of schooling or extensive testing (yes, I’m talking about the Bar) is out.
I’ve been dealing with POTS for about 9 months now, and this time has mostly been spent in mourning for the life I could’ve had, adjusting to this new situation, and learning about this condition and how it affects me. Now, I’m trying to rebuild the pieces of my life that have fallen apart with POTS. I’m hanging out with my friends and helping them understand how our relationship will be different; I’m working towards a degree in Communications, even if it will take me a few more years than expected; I’m finding extra-circulars that I can manage (thank you, Eagle, for having student bloggers!); I’ll be attending a job fair hosted by Disability Services in a few weeks to try and find an internship that will work for me.
Each day I live with POTS, I learn something new about myself, the people around me, and the world as a whole. I have realized how kind people can be, and reversely, how insensitive they can be. I’ve started to see how hard it is to live in a non-disability friendly world for people with disabilities. As for what I learned about myself, well, I’ve learned that a POTS downswing can be the perfect time to learn the lyrics to the Fresh Prince theme song—a skill I now show off to all my friends. I’ve learned how to pass the time when I’m stuck in bed all day, and I now have excellent taste in television—something I’ll be sure to talk about in this blog.
I hope for this blog to be a way for me to document my struggles, triumphs, thoughts, and—of course—TV recommendations as I continue my journey with POTS, reworking my identity and figuring out where to go from here.
Posted in People to People