Attending school with a chronic condition certainly comes with its challenges. Though accommodations do exist, schools and universities are not familiar enough with dynamic chronic conditions. The education system in general emphasizes a grind mentality where its students and staff work until burnout. With limited breaks, limited mental health resources that are actually helpful, and tentative dates with a little negotiation, school can be highly stressful and makes balance incredibly difficult. It is difficult for a normal person to balance school, mental health, relationships, work, exercise/sports, and other extracurricular activities along with sufficient rest. These systems that perpetuate a constant grind are very difficult to navigate with chronic illness. It is especially difficult if you become sick during the middle of the year. For many, the changes and necessary accommodations that come with a sudden and severe chronic condition are out of line with this system, forcing many to take a break from work and school altogether. I don’t know firsthand what it is like to deal with POTS in high school or grade school altogether, but I can imagine the 8-hour days of classes back to back in the same building would certainly be a challenge and I am thankful that I made it to college without POTS significantly affecting my life. In grade school, you are not granted many freedoms and breaks and so I am sure many permissions are required.
My College Experience Following a POTS Diagnosis (long and personal story time)
It has certainly been difficult to adapt to this new lifestyle in college. As an adult, I have many more freedoms, but simultaneously, I have a lot more responsibilities and a lot less help. The timing of my sickness made things all the more difficult. Getting sick right at the end of my freshman year of college was difficult because I had only just completed my first year which came with many changes. It would still take time for me to adapt to being far away from home and my family, and living in a city with dynamic relationships. Once I got sick I worried heavily for my second year back. In general, things are constantly in flux in college, even between semesters. Your relationships change because class/work schedules and living situations change constantly and at this age, people are starting to really figure out what they want in their relationships and who they are, which can complicate things. I knew to a certain extent that my sophomore year would be different just for those reasons alone, so I was worried about how having a life-changing illness would affect my ability to continue my academic career. Well, it absolutely changed a lot of things for me, many for the worse, especially at first, although those things continue to get better as I improve. The initial impact of the change was enough to make me want to give up over and over again. My strength and resilience were constantly tested and I would question whether it was worth it or whether I needed to fully pull out of school and stay home. Although I had just started a great life on my own with new people and opportunities, now that I was sick, going back felt so unnatural and wrong. The months I spent doing a semester online at home felt as if my life had stopped and everyone else’s continued. I was the loneliest I had been in my entire life. I didn’t even have my sister. The one person I could always count on as a friend. Being at home was never great for my mental health and it certainly made my condition worse in many ways. I had fallen back into patterns of anxiety, panic, and worry that I had worked so hard to get out of and away from. While I physically had to be there due to my dependence on my parents and inability to take in-person classes, mentally I could not heal there and so the time that I was supposed to take there to heal was somewhat impeded and my healing was slowed.
So my parents and I decided that I would go back to school. Well, the decision was made twice actually. After becoming sick in May of 2023, when August of 2023 rolled around we thought it would be possible for me to go back. The idea that I would maybe suddenly get better or at least that it would “only be up from here” drove that initial decision. Oh how wrong we were. At that point in time, I did not go anywhere alone, I had trouble walking short distances, I had many severe episodes, I was incredibly anxious to be in public, especially alone, and I had yet to know what it would be like to handle a normal class workload. A very long story short, I got on a plane for the first time since becoming sick (a feat on its own) and flew back to school in Charleston with the hopes of moving in and somehow sticking a semester out. The trip alone and moving my things into my dorm was incredibly taxing on me. Although I hardly did anything physically. My mom did almost everything for me, but just being present in new environments, seeing and having to interact with many people again, and walking a ton (for me at the time) in the heat was so taxing and I realized how uncut out I would be for college again. I realized that I had not dealt with large amounts of anxiety and trauma around my episodes, being in public, and not having access to my parents. Not only that but physically I still required so much help. Help that my friends certainly could not give me. It ended up being the right decision to do the fall semester at home because I had trouble functioning at home and even doing my online classes.
Although about halfway through that fall semester that I spent at home, the idea of going back in the spring seemed more and more doable. I had begun to exercise again and the prospect of my POTS suddenly getting better seemed more probable. This was unfortunately just a wave of false hope, however. Eventually working became very hard to the point where on days that I worked out, I literally could do nothing else physically. Not that the episodes ever significantly reduced though they were less for a time, but at this point, they started to become very frequent and I experienced different episodes I had not experienced before. I had newer symptoms that scared me into thinking that there was more going on with me on top of the POTS. Many times I just couldn’t believe it was “just POTS”. Not that POTS isn’t a horrible condition, though it would baffle me that a chronic condition that is not inherently dangerous and that has limited research and treatment could make me feel like I was truly dying. As the winter set in I became weaker and my mental health worsened significantly due to other personal issues I was dealing with all at one time. Worst of all I experienced complete and utter hopelessness at times. I held a constant nagging dread that my life would continue this way for longer than I could handle. It always felt as if I was constantly reaching my breaking point where I needed something to change. The thing that kept me going was the random few minutes, or hours, or even a day where my symptoms would subside slightly and I would do something that made me feel human again.
As I got closer to the start of the next semester the possibility of going back seemed estranged and yet I couldn’t imagine another semester at home. One unprecedented event after another occurred. A death in the family, I got COVID, and I experienced episodes of a dropping heart rate that would shoot up the next second accompanied by some very scary palpitations that made me fear I was developing a dangerous arrhythmia. So the two-week heart monitor became a part of me again. Though I was seemingly in no shape to return to school again I had to. Yes, I was worse off but this time I began to pull away from the fear of being away from home and those who knew my condition and exactly what had happened to me. I knew at some point no matter how much worse or even better I got that the fear had to be addressed head on. I couldn’t end up agoraphobic and miss out on another chapter of my life. The truth was, there was always a possibility it could get better because I would be in a different environment. An environment with distractions and significantly less stress. Maybe not less stress but the type of stress would trade off for that I could handle much easier. The idea of meeting others with my condition also came to fruition. Ultimately, at this point, I didn’t “need” any of my family. I had become good at getting through episodes alone and could do basic things. In-person classes would not be too different as my classes would be short walks and I could take breaks and miss class sometimes. If class and taking care of myself were all I could do, that is all I would do. The ER would always be closely available to me and there was really nothing my parents and sister could do other than support me and make things easier emotionally. The fear that I was experiencing something life-threatening could continue no longer.
So I went back. My dad and I gave ourselves multiple days to move me back in and settle in Charleston again. I was excited about it. It would be good quality time and I would be moving towards gaining my life back again. It was good for a day. Yea, and then it all went to shit. At that point, nothing could ever surprise me, although it did phase me. Badly. I got sick with food poisoning which I didn’t think would be worse than COVID with POTS, but it was excruciating for me. The timing of it all certainly played a part but I had never felt too weak. I looked at it too. But it was quick in the grand scheme of things. I was recovering and the last day that my dad would be with me approached and it was time for me to fully move into my apartment. So I did, and then my throat began to get sore and my sinuses became full and painful. No way I was getting sick with something ELSE. It was so strange, that I managed to develop a severe sinus infection in a matter of a day and it was seemingly from the black mold I later noticed on my window sill (this is significant as I later found out I had mold poisoning from the previous year). Well, this was the last of it. I don’t think my body could have handled a single other thing. But it made for a very horrible transition into the school year. That night I ended up in the ER because I thought I was sick with something more serious considering how deathly I felt. My blood pressure was super high and my white blood cell count was pretty high. There I was rethinking a lot of my decisions. Were these signs for me to give up and abandon the thought of continuing school out of state? It certainly seemed that something was trying to prevent me from doing so. I was so angry and sad. I could not take care of myself in my current state. I wanted my dad to stay so bad.
Why couldn’t things be easier? Why couldn’t there be someone there to help me through all of it? The worry that I couldn’t go through with my plan was outweighed by the fearsome idea of continuing my life back at home where I couldn’t see a future for myself. Academically, socially, and environmentally there was no way I could choose that after the life I had made for myself my freshman year of college. I never really made up my mind and chose. I couldn’t think about anything anymore. This was the only plan I had and I couldn’t even fathom flying again. So I stayed and watched my dad leave. He hated it but knew it was right for me. I stopped thinking. For a few days, I just went through the motions. I was sick so I took care of myself. I gradually began to see my friends. And eventually, the first day of classes approached. I got better and now just had the baseline POTS to deal with. Though my baseline had dropped significantly.
So how did I do it? Well, I think the one thing that put me back on my feet was actually birth control. I have discussed this briefly but my periods significantly affected my POTS short term and long term. I had to mess with my heart medication during them creating a cloud of symptoms. I started birth control a few days before I left to come back from Charleston. I noticed an instant difference prior to leaving. Once I gained strength again after the flood of sickness It seemed it was the one thing allowing me to start living life on my own again. For the first few weeks, even months of the semester I was sure I would get bad again and end up going home. But I continuously surprised myself in what I could do. It was a mix of trying new things little by little and pulling away from the anxiety that held me back from doing things along with the birth control that put me on a path for healing. Things were still very hard at times throughout that semester but I was living again.
Where am I now?
I am now at the end of the fall semester of my junior year and from an overarching viewpoint things have been on the up since the spring. I spent my first summer in Charleston and truly got back into exercising again, but this time in a way I could sustain without flaring severely. I had fun and was able to visit home on my own terms. There have still been lots of personal changes in my life that are difficult to deal with being chronically ill but I have managed. I have learned that my environment and especially the people I surround myself with are crucial to my healing. It’s been hard to find the right people who can meet my needs now. I am different and I need certain things from people. It’s hard to put your needs first over pleasing people. Even those who you know truly care about you and would do anything to help you. There is a sense of being a burden as well as guilt even in the smallest of instances. The fear of being written off when future plans are formed if you cancel or change plans frequently or have to leave events early. Especially as I have gotten better I tend to push myself more and I get angry when I reach my limit earlier than expected or if I have symptoms I haven’t experienced in a while. When my POTS was the most severe, when symptoms started I had a pretty good idea whether or not things were going to get bad and if they would stay bad for a while. Now, there are many times when I am just not sure because I will feel symptoms that used to indicate a long episode that would put me out of commission for hours, and yet it sometimes subsides soon after and I can carry on. I find myself constantly waiting and unsure of where my body is going to take me next. I can not always act ahead of time to prevent things from getting bad. All this being said, it is worth it to try and push through when I am unsure because my body pleasantly surprises me at times and has allowed me to enjoy things I didn’t think were possible.
I am currently on break between semesters and recently saw the POTS specialist I waited almost 2 years to see. Was it everything I hoped and dreamed? No, but it was much better than what I feared. I was listened to and understood, my POTS diagnosis was reaffirmed and I was diagnosed with Mast Cell Activation Syndrome (MCAS). I was not expecting that diagnosis. I didn’t think I had enough of the symptoms (granted I need to do more research beyond what was done for my post on Comorbidities) but the specialist seemed to be pretty sure. I will discuss this appointment further and my treatment going forward in another post.
Accommodations and resources
Since I am in college I have a 504 plan which I set up by contacting the disability apartment at my college. It is a long process and may look different depending on school and requested accommodations. My listed accommodations are somewhat minimal but the disability director is aware of my diagnosis and the details regarding my symptoms. I have the following accommodations:
- Extended time (time and a half) on tests and quizzes
- Extensions on assignments if I reach out to professor and discuss
- Food and drink allowed in class
- Flexibility with attendance
My accommodations have changed slightly over the last two semesters depending on what I need and I am sure I will no longer need some and maybe need to add others depending on how my health is during the next few semesters. Even if you don’t think you will need it, if there is a chance you might, it is good to have the accommodation available. You should make your professors aware of your condition and share as much detail as you think appropriate. So what are some other resources for chronic illness in college aside from documentation through disability? From experience, simply meeting others with chronic conditions online or in person on campus has been very helpful. Talking about your illness even briefly is helpful as many people know of others with chronic conditions and some even have them themselves. With POTS alone I met or know of a handful of people already on my campus. There may be support groups affiliated with the college but they are likely separate but held among people on the campus. Luckily, at my college I was able to get in touch with a student named Molly Dickerson who started a podcast called “The Sick Gaze” which was being promoted online through a meditation club I was a part of. I talked with her and she shared her struggles with chronic illness and she interviewed me on mine. It was very illuminating to hear the struggles of other young women with chronic conditions and how it transformed their lives. I felt very seen having discussed my story in detail and putting it out to the public. Just sharing your experience can influence people in their journeys much more than one can imagine. Molly also got me in touch with others struggling with POTS and other conditions who she had interviewed which was great.
Positive/Helpful Note: Listen to the The Sick Gaze podcast! Here is the episode I was featured on. Take a look at the other episodes that feature other young chronically ill students as well as people of other ages and occupations. They are very insightful!
