I started Tapti Talks as a way to discuss some of the less romantic realities of student life — and today I’d like to shed some light on my experience as a chronically ill student at Amherst.

I’m technically writing this article with a concussion, which I received last Tuesday when I passed out in my room and hit my head on the floor, after an hour of seeing black spots in my vision. For a lot of people, this would be a freak occurrence, an unfortunate incident that stemmed from some sort of unhealthy habit or a sudden illness. For me, though, this is all-too-common.

I was 14 when I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS. The diagnosis came as a relief after a childhood of being considered a “দুর্বল” (weak or sickly) child in Bangladesh. My parents have always joked that if someone coughs within 100 meters of me, I will get sick; I am so susceptible to the fevers and illnesses that somehow manage to escape most of my peers. When I started passing out or complaining of constant lightheadedness, it was just attributed to my frailty — “some children are just born weaker than others,” the doctors would tell my mom.

With the diagnosis came a myriad of changes: higher salt and water intake, new meds with the incredibly fun side effect of a compromised immune system, and the knowledge that fainting was now a semi-regular part of my life. Even with my POTS, however, I tried to live as normally as possible.

POTS only became as big a part of my life as it is now after I got Covid-19. At Amherst, we’ve had a lot of controversy surrounding masking debates and reasons to or not to mask, often talking about immunocompromised and chronically ill people in the abstract. Well, my experience with Covid-19 a showcase of its detrimental effects. In the immediate aftermath of having Covid-19, my POTS worsened drastically, to the point where I was going to my classes lightheaded and fatigued out of my mind. There were multiple instances where I would quite literally be unable to walk, feeling pain course through my body and having to ask my friends for help getting to Val or Frost so I could get even a little bit of work done. While I have steadily improved again since then, my condition still hasn’t returned to its pre-Covid-19 level.

Every cardiologist I’ve seen, both here and back home, said there was nothing they could do for me, citing statistics of poor prospects for POTS patients post-Covid-19. “How can I prevent my blood pressure from suddenly dropping below 80/60?” I would ask. “Eat salt and lie down so you don’t hit your head when you faint,” they would tell me.

This past year, I’ve really had a reckoning with what it means to be “disabled.” Walking up hills to my classes, I am forced to stop as I feel my heart twinge painfully, and I inevitably arrive late (there’s a conversation to be had about how inaccessible Amherst’s campus topography is). I am unable to leave bed sometimes, feeling too weak to even lift my limbs to email my professors. I find my hands freezing up and turning numb and blue in the middle of typing an essay, and I am forced to run them under hot water until I can use them again. My email’s “sent” folder is a litany of “I’m sorrys.”

Living with chronic illnesses is a constant set of compromises with yourself. I try to do work in advance, because I know I will inevitably fall behind when my flare ups take place. If I go to the gym, I cannot do anything strenuous for the rest of the day or else I will feel ill afterwards. Anything involving heavy activity — hiking, rafting, climbing — is either near impossible or extremely difficult for me to do. I have an internal debate about whether to go to every social gathering I’m invited to, knowing there’s a chance I’ll be infected — if not with Covid-19, then the common cold which for some reason gives me a 102-degree fever.

I’m still learning how to take care of myself and be mindful of my illness, and I’m sure many of my peers who are chronically ill can relate. If there’s any piece of advice I would give to my past-self though, it would be to give myself grace for the times I’m not feeling so great; and on the other side of things, to take advantage of the good days, whether it means catching up on work, hanging out with friends, or doing something outdoors. I find that I’m happiest when I feel like I’m able to do all the things everyone else does.

My POTS isn’t going away any time soon, and there’s not much to do about it but make the most of each day as best I can. I’m hopeful, and I have so much to be thankful for. My positivity isn’t false at all because I know my illness doesn’t define my identity. I have been so lucky to have professors that are incredibly understanding and supportive when I’m not at my best self. To my professors, if you’re reading this, thank you so much. And to my lovely, lovely friends and family, who have called and texted and walked me back from class and fed me salt packets and knitted me fingerless gloves to keep my hands warm, there’s nothing I could really say to encapsulate my gratitude more than: <3

chronic illness

Tapti Talks: Living with Chronic Illness