Ah college. A wonderful time filled with doubt, debt, binge drinking, and research papers written the night before. School can be lots of fun and it can also be tear-your-hair-out stressful. When you’re a spoonie, the stress has a way of following you on days when other people would be skipping. Sometimes it seems like all you do is worry and make explaining to your professors “I really do like this class, and I take it very seriously, I just wasn’t able to do the homework for the third class in a row” a career.
I’m now *technically* a senior in college (more on the technical aspect later) and along this 4-year path, I’ve learned a few tricks to keeping my spoonie head above water. Hopefully this post will help my fellow Worry Warriors. Have a tip or trick of your own? Feel free to post in the comments below! Let’s keep this conversation going!
Be like a Boy Scout
The best trick I learned, after spending an entire semester bumming ibuprofen off friends, was that it always pays to be prepared. I always carry ibuprofen around with me in my bag because part of a chronic illness is never being sure when the pain will strike. What I carry with me on a day-to-day varies based on that day’s activities. Know I’m going to be doing a lot of hand-sewing in the costume shop today? Better bring my wrist braces, just in case. On campus shuttle not running today? I should make sure I’m wearing my sneakers, so my feet don’t tire out as quickly. At first you might feel like a doomsayer with all these ‘just in case’ items in your bag but trust me: it only takes one time without to be grateful you planned ahead.
Do some research
While colleges don’t fall under the Individuals with Disabilities Education Act (IDEA), they do have to comply with the Americans with Disabilities Act (ADA), meaning there should be a Disability Support Service (DSS) on campus. Before the semester starts, reach out to your school’s DSS and see what paperwork is needed to qualify for accommodations. Most universities will have an easy to fill out form for your doctors, and once it’s submitted, you’ll be assigned a case officer to help decide which accommodations best suit your needs. This can be anything from extra time on tests, to bi-weekly check-ins to make sure you’re staying on task. It depends on your needs and your university’s ability to provide.
Become your own advocate
I’ll admit, this one is a bit tricky. Being an advocate for yourself is difficult in the best of situations, but this is a skill that every spoonie, worry warrior, and general pain fighting badass needs to perfect. While your doctors and your DSS case manager will do what they can, ultimately it is up to you to get the help you need. If your case manager isn’t offering an accommodation you need in order to be successful, don’t just sit there and suffer in silence. Speak up and tell them what you require! I also recommend stopping by your professors’ office hours and taking some time to go over your DSS forms and discuss your thoughts about the upcoming semester. If the semester has already started, it’s not too late! Your needs are important, and your professors want to hear from you. Remember, you have the power! Use it!
Take a break
Taking a break is important for everyone, but is especially important for spoonies. If you’re studying for an upcoming test, make sure you have a timer set for 15-20 minutes, and once that timer goes off, give yourself a 5 minute stretch break to help all your muscles breathe, including your brain. During the week try to plan something fun or energizing to look forward to. Maybe meet a friend for coffee before class or take the time and paint your nails one evening. Proactive self-care is crucial for a successful semester. (Pro tip! Proactive self-care isn’t just the pretty bubble baths and skin care products you see on Pinterest. Sometimes it means sucking it up, cursing the day you decided to take this stupid class in the first place, rolling up your sleeves, and doing the research paper you’ve been putting off for a month.)
Time is of the essence
Recently I’ve found a new way to inadvertently annoy my roommates: lots of affirmations and inspirational quotes taped up everywhere around the apartment. I do mean everywhere. On the mirror, the fridge door, above the sink, by my bed, across from the toilet! I see them all the time and they remind me of ways I want to live my life. My favorite is a Chinese Proverb that helps me with my spoonie time management: “The best time to plant a tree was 20 years ago. The second best time is now.” Obviously it’s best to nip all this in the bud so you can continue kicking butt and taking names, but maybe that wasn’t an option for you. The best thing you can do is support yourself now. Don’t wait until things seem almost impossible. Think of it as self-care for your future self. Future you will be grateful.
In the same vein, it is important that us spoonies operate on our time table, not someone else’s. Remember above when I said I was *technically* a senior? I say that because even though I’m a senior in college, this is not going to be my last year. I am going to take an extra year of studies. Coming to the place where I could make this decision was really difficult. I felt that I was letting myself down, that I was adding more to my debt for no reason, that I was just being lazy. But the thing is, I know my body better than anyone else. If I push myself too hard today, no one is going to have to deal with the consequences but me. If taking an extra year is what I have to do to keep my class load manageable and my pain levels down, that’s what I’m going to do.The four-year college plan isn’t for everyone. Heck, college isn’t for everyone! I’m confident in my decision because I know it’s what’s best for me. And everyone should operate, not by society’s set timeline, but by what is best for them.
Worry Warrior- Life with Chronic Illness 