For some, mornings can be a blur of rolling out of bed, getting ready in a hurry, and scrambling out the door. My mornings, however, start slow; they have to. My cardiologist recommended sitting in bed for 10 to 15 minutes before trying to stand, so that’s what I try to do. I wait. I drink my water and wait for my body to slowly adjust. If I wake up a little too late and try to get out of bed quickly, my vision goes black. It was scary at first, but now I’m pretty used to it. I’ve memorized the layout of my apartment so I’m halfway to the bathroom by the time I can see again. I do my skincare and make up sitting down to save my valuable “standing up time” for when I really need it. I take my medication, put on my watch to monitor my heart rate and head out the door. It’s my normal now, I don’t even have to think about it. I don’t think about the fact that most people won’t ever pass their walker by the door on the way to their college class.
I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) five years ago, but it wasn’t the dramatic, life-altering moment I thought it would be. It was just some tests and a short conversation with the doctor. For something that’s impacted every aspect of my life, the actual diagnosis was rather anticlimactic.Â
POTS is an autonomic nervous system disorder, or in other words, it impacts functions that happen automatically in the body, such as blood pressure and circulation. Most symptoms are present when one stands up because blood pressure naturally declines then, and when the body can’t correct it fast enough, the brain doesn’t get enough oxygen. POTS presents fairly similarly in most people with the severity of each symptom varying on a case by case basis. Common symptoms include lightheadedness, brain fog, tremors, exercise intolerance, nausea, heart palpitations and an heart rate increase of over 30 beats per minute when standing. I experience all the common symptoms but the most severe is syncope, or passing out.Â
I was diagnosed in high school and despite the presence of these symptoms, I managed most things just fine. College, however, was a whole different ball game. As soon as I started having to walk 10 to 15 minutes to each class, sometimes in 90 degree heat or freezing cold weather, my symptoms started getting in the way of my education. Sometimes I’d get halfway to class and have to sit down because I could feel a syncope episode coming on. Even now that I drive to class, I have to make sure my symptoms are managed enough for me to be confident I won’t pass out at the wheel.
Passing out is terrifying. I only started having full syncope episodes three years ago; in that time, I’ve passed out more than I can count. There are so many aspects of POTS I feel I’ve adjusted to and can handle like it’s normal. Syncope, however, is not one of them. No matter how many times it happens, it still scares me. I can usually feel a syncope episode coming on about a minute before I lose consciousness, which gives me time to lay down wherever I am to ensure I won’t fall and hit my head. It’s hard to describe what syncope feels like, but for me it always starts with lightheadedness, then my vision starts to swim. I can hear my heart racing and my breathing become heavier. I gasp for air, my vision darkening around the edges before fading out completely. I wake up a few seconds later feeling groggy and trying to steady my breathing. I recover quicker now than I used to, and can usually walk again in a few minutes, but I’m shaky for the rest of the day. One of the only parts of POTS that’s as bad as syncope for me is the anxiety that comes with it. Whether I’m driving to class or walking up stairs, I never truly know when I’m going to pass out. It took months for me to be comfortable enough to start making plans again after I began passing out regularly.Â
Needless to say, school is harder when you can’t always get to class, so I sought accommodations. I worked with Old Dominion University’s Office of Educational Accessibility to get excused absences and extensions when I can’t make it to class. Though these accommodations helped tremendously, I was still struggling, especially when I first started experiencing syncope. In the spring of 2024, I dropped out of ODU, unsure if I was coming back. Between the uncertainty of my health and trying to figure out what career paths would be accessible, I became completely overwhelmed. I took online courses through a community college while attending countless doctor’s appointments and tests. I used a rolling walker for months, ignoring the stares it earned me. After a lot of trial and error, I found medication and lifestyle adjustments that manage my symptoms well enough so I can attend in person classes again. I was so excited to return to ODU and even though I have to be hyper aware of so many things, being back on campus is worth it to me. Chronic illness can be extremely isolating, so being back in in-person classes and having the ability to join student organizations has really helped me. Overall, though being a student with a chronic illness has its struggles, the communities I’ve found make it feel a lot less lonely.Â