College life is hard on everybody—and that’s an understatement. Intensive classes, mountains of homework, moving house every year, making and keeping friends, balancing sleep and extracurricular activities, trying to stay healthy and fit under stress, and exploring your sexuality isn’t easy for anyone. It’s an uphill battle for most, but even more so for someone like me.
I have two chronic illnesses, gastroparesis (GP) and something that is not confirmed but looks a lot like Ehlers-Danlos syndrome (EDS). I’ve had symptoms for half of my life, but proper investigations for both were (and still are being) delayed for many years because both GP and EDS are quite rare and difficult to catch. GP causes my stomach to digest food very slowly, which leads to a range of unpleasant gastrointestinal symptoms. EDS is a genetic disorder that causes the body to not produce enough of the protein collagen, which is an important ingredient in the connective tissue that holds our skeletons and organs together. It’s hard enough to deal with just one of these diseases, but fighting both together? It’s a whole new ball game.
It’s worth noting that my illnesses are “invisible,” meaning that you can’t tell I’m sick just by looking at me. When your symptoms are mostly internal, it can be hard to be open about your illness for fear of others overtly invalidating or questioning your pain and disabilities, or even just thinking silent critical thoughts. This is just the icing on the cake of college stress and my actual symptoms.
Many healthy people are unaware of what chronically ill college students struggle with on a daily basis. However, unlike GP and EDS, unintentional ignorance has a cure: education. That’s my mission: to show people who may not be aware of what we go through every day what it’s like to be a college student living with invisible chronic illness. I’ve boiled the important aspects down to a list here (note that there is an extremely wide range of chronic illnesses and a wide range of symptoms/presentations within the population affected by each of them, and my experiences are therefore not the same as those of other chronically ill people):
1. The dining room is ridiculously uninviting.
I assume the Terrace Dining Room (TDR) is not much different from any other college’s central dining halls—not the most appetizing fare and home to absurdly long lines whenever they’re actually serving anything worth eating. Thanks to my gastroparesis, though, eating at TDR is an especially formidable task. I try to avoid foods that are high in fat and fiber while maintaining an adequate vitamin and mineral intake, which is hard seeing as raw fruits and vegetables are often quite fibrous, and frequently the only cooked option involving vegetables in an omelet. I have also noticed that TDR often doesn’t have all of the items listed on its menu, so I’m usually stuck with a bowl of cereal for breakfast (and a bad mood).
2. Going out and socializing outside of my floor are often pretty low on my priority list.
My classes, and the walks between them, wipe me out to the point where I need longer breaks in between to take naps. That usually leaves me in a crunch to get homework and studying done. Aside from my twice-weekly engagements with the floor TV for “American Horror Story” and “Grey’s Anatomy,” I don’t get much “me time”. When I do have a free moment and people on my floor want to go to a party or explore D.C., I usually remain flopped on the couch because I simply don’t have the “spoons” (a word many people with chronic illnesses use to refer to mental and physical energy) to leave the building.
3. I am basically married to my bed.
Many chronic illnesses feature fatigue as a prominent symptom, and mine are no exception. Coffee rarely works for me, too, so I might as well avoid the lure of spending boatloads of money at Starbucks. I will forego a Pumpkin Spice Latte in favor of my beautiful, soft mattress, pillow and blanket any day.
4. Focusing in class is the ultimate struggle.
As I’ve said before, my chronic illnesses do a number on my sleep cycle. As a result, I wake up feeling sleepy and unrefreshed several times a week. I come close to falling asleep in class often. My tiredness often carries through the day too, making it hard to pay attention to the professor unless we are doing something hands-on. Occasionally, to make matters even worse, the symptoms of my illnesses also decide to show up while I’m in class. It isn’t easy to concentrate when nausea or pain pays a visit.
5. Non-chronic illnesses make me absolutely miserable.
College housing is almost always a cesspool for all sorts of germs. With so many people packed together in one living space, it’s pretty hard, if not impossible, to avoid exposure to other people’s germs at some point or another. For many of my peers, a cold usually means a day or two curled up with tea and Netflix, but for me it’s a sordid, drawn-out affair that can last up to a few weeks. It’s simply harder to handle fevers, congestion, sore throats, etc. (both physically and mentally) when my daily life is already filled with pain and discomfort.
6. Chronic illness and body image are notorious enemies.
GP occasionally makes my weight fluctuate slightly when I’m going through a flare-up, and like many young people, small changes in my weight can make me feel better or worse about myself, depending on the direction in which the change goes. For me, it’s merely a small annoyance that doesn’t prompt me to take further action to lose weight, but it’s important to acknowledge these thoughts, as they can be dangerous in some cases. Another thing GP likes to do is make me varying degrees of bloated, which makes me feel rather ashamed of my body at times. My EDS-like symptoms also interferes with my self-image, though to a lesser extent. This mainly shows up as me feeling self-conscious due to my inability to exercise much, my inability to walk far without pain and the tendency of my elbows to hyperextend very obviously (“double-jointedness”) all the time.
7. Being sick all the time leads to a lot of academic insecurity.
This is a big one. I feel like I am always falling behind on assignments and studying due to not feeling well and my need to sleep all the time. My anxiety rises every time I see a peer who gets their work done efficiently and without too much stress, while I can barely keep my head off of my desk. Even though my academic heart is in the right place, I somehow manage to always feel like a bad student because my body has extra needs that must be addressed.
8. Lines are literally the devil.
Nobody likes waiting in line, but for me, the dislike is physical as well as mental. If I stand somewhere for more than five minutes or so at a time, my knees will start to hurt from the stress my body weight is putting on them. Foot, knee, and occasional hip pain together with generalized muscle pain throughout my legs means that for me, a long line is a trip to hell.
9. I’m always on the lookout for insensitive remarks about chronic illness and disability.
It’s unbelievable how little the able-bodied/healthy community tends to understand chronic illness and disability. Many people make ableist comments because they simply don’t know about how what they say could be offensive toward a particular person or group (though some have been educated before and are willfully making derogatory remarks). These statements are known as “microaggressions”. The worst comment I have heard that offended me personally was when we were coming back into our dorm after a fire drill and a student I didn’t know said something along the lines of “I bet all these people are taking the elevator up to the second floor.” That one particularly stung because I know that just because you can’t see someone’s illness or disability doesn’t mean that the person doesn’t feel the pain they say they feel- like going up the stairs.
10. My illnesses are a significant part of my identity, whether I like it or not.
My illnesses affect every corner of my life and health—physical (obviously), mental, emotional, social and academic. They present me with unique hurdles and challenges that would be hard for a healthy person to fully understand. Many chronically ill people have had others tell them things like “don’t let your illness define you” time and time again. While people who say things like this generally mean well, this kind of statement is problematic because it implies that chronic illness is a reason for shame. I refuse to let others tell me how to feel about the hand I have been dealt by powers beyond my control. Chronic illness makes life, especially in the transitional college years, hard—there’s no doubt about it- but it has also gifted me with unique strength and compassion, and I will not be ashamed of that.
