Tips for getting through college w chronic illness?
Being in college as a spoonie is rough. Looking back, there are some things I would’ve done differently, but I made it through. Here are some tips (and followers, please feel free to add on!):
-Talk to your Office of Disabilities (ODS). You generally need to provide some sort of note from your doctor saying you require accommodations, but from there, you can discuss accommodations. If you’re undiagnosed, this can still be done—explain what symptoms concern you most to your doctor and they can write a note saying you need ‘x’ accommodation.
-Some helpful accommodations may include: an accessible dorm room (note that these may be single dorm rooms, but that may be a benefit if you need a lot of sleep/down time), early registration for classes (especially if your symptoms are worse at a certain time of day), extended time on exams, being able to sit when doing presentations (I’m prone to passing out if I stand too long, but if you think you’d use less energy standing, still can be helpful), having someone take notes for you (helpful if you have brain fog/chronic pain), take electronic forms of your books to class (especially if they’re super heavy books), etc.
-Talk with your professors. Some of them will want to meet about your accommodations so they understand your needs. Legally, you don’t have to tell them about your condition(s) if they ask. I was happy to educate them, but if that’s not you, just say ‘I’d rather not discuss it, thanks,’ or ‘I’m still figuring out my conditions myself.’
-In regards to your profs: if they challenge you about your accommodations, go to the Office of Disabilities. I had a professor ask me “how long CAN you stand???” It wasn’t her business, and she should have followed my access plan (list of accommodations) without questioning it. Baby Spoonie Emily was baffled and muttered something about only being able to stand for a minute or two without getting dizzy. I ended up sitting ON TOP OF A DESK in A DRESS because the prof insisted I need to look “natural.” This was BS and I should’ve gone to ODS. I will say this was the only prof who questioned me, thankfully, and you may not have this experience. Hold your ground.
-When you read, take notes. If you’re like me, I couldn’t remember details of what I’d read without it, which meant SO MANY NOTES as an English major.
-Socializing is part of college. I’m assuming you’re on-campus and doing things in person, so apologies if that’s not the case (though I’d suggest making sure you socialize as well if you’re online; volunteer, meet up with others online, etc.). A reason I mention this is because a) I had a single dorm room, which got me through college, but it meant I didn’t have a roommate and b) even when I lived off-campus, I couldn’t drive and relied on the bus, so I was limited in where I could go or what I could do. I isolated myself big time my sophomore year and got lowkey depressed. I had one extracurricular activity I did, and that was too much at times. If you’re lonely, reach out. Ask people to come to your place to watch a movie or TV show while you lie in bed, say you just want some company when folding laundry, or meet up when you’re eating lunch/dinner.
-On the other hand, don’t let others push you. Well-meaning friends have pushed me to go out, stay up late, and drink, and while I wanted to spend time with them, I knew my body would suffer. Though I do wish I had been able to do more in school, I graduated, and getting an education came first. Learning to listen to your body can be hard, especially when your able-bodied friends don’t always get it. Do your best to explain things to them (the Spoon Theory is very helpful in explaining chronic illness and my close friends will wish me spoons and it makes me want to cry)—you want to spend time with others, just not at the expense of your school work.
-Get a meal plan and/or if you’re off-campus, see if you can have your food delivered to your apartment. I had a meal plan throughout school, which was super helpful when I didn’t want to think about cooking, and but when I moved off-campus, I couldn’t eat every meal on-campus. There was a service that delivered groceries to you, and yeah, it was probably mostly for seniors or busy parents, but it helped me immensely.
-If you’re living off-campus, look at the proximity to stores (my apartment was a three minute drive to the grocery store, which helped until I couldn’t drive) and make sure a bus runs to your apartment complex/area! I befriended a bus driver and if he saw me on campus with my cane and knew I was headed to a stop, he’d honk and save me the steps to getting to that bus stop. He was the best. Maybe you can drive and will park on-campus (though this can be super expensive and parking is sometimes hard to find if you don’t have a placard, which is something I’d also recommend getting), but there will be days where you will want/need a bus service. Most big colleges have these, and if yours doesn’t, they may have buses specifically for disabled students. Look into your options.
-Look into scholarships and financial aid. There may be something for your major, and sometimes there are disability-related scholarships, too. This is something I wish I had done more of, even though it takes energy and time.
-Talk with a career counselor. I did this the semester before I graduated to ask about how to field questions if an employer had questions about why I had taken a break between graduation and getting a job. I graduated in May, spent time to focus on my health, and am looking for remote jobs now. The counselor was very reassuring and told me lots of people take breaks before applying for jobs, and saying you were spending time on yourself (without being specific about your health, which you don’t have to mention) and making sure you were prepared to work. Overall, this can just give you some peace of mind if you’re concerned or have any questions or just want some reassurance.
-Go at your own pace. You may not graduate in four years, you may have to take breaks, and all of that is okay. There is no “right” pace. You deserve to not sacrifice your health altogether for an education, and if that means taking a few extra semesters or years to graduate, that’s okay.
