Ten Tips for Surviving College With CFIDS

By Rebecca Bailey

Originally published in Youth Allied By CFIDS, Summer 1996

If you are a college student with chronic fatigue and immune dysfunction syndrome (CFIDS), you may think that the band will never play Pomp and Circumstance for you. CFIDS complicates the normal worries of college life, from exams to social life to post-graduation plans. Since I became ill two years ago, I've often despaired of ever donning my cap and gown. But, by taking one or two classes at a time and plenty of time off, I've completed most of my education and in a few months I will finally receive my diploma. Here, based on my own experience, are some suggestions to help you persevere until graduation.

1. Communicate with your professors.    At the beginning of each semester, sit down with your professors and explain your situation in detail. I recommend taking a full half hour to describe CFIDS and your special needs. For instance, explain that you may need to leave the classroom at times or miss classes more often than other students. In addition, don't hesitate to request flexibility in paper deadlines, untimed exams with a couch nearby and photocopies of another student's notes.
   Bring along some written information about CFIDS to help your cause. Remember, professors respect facts and research; they respond well to evidence in the form of pamphlets, books or charts. One of my English professors, for example, looked confused about my illness until I pulled out The Doctor's Guide to Chronic Fatigue Syndrome, by Dr. David Bell. As she flipped through the disability scales and pie charts, I saw her face finally register the gravity of this illness. Keep in mind that you deserve special accommodation. Most professors are happy to give it if they understand why it is necessary.
   
2. Try books on tape.   If you're like me, you may have difficulty reading, especially college-level material. To avoid this problem, consider listening to a book instead of reading it. Many books for literature class are recorded on audiocassette, so you can absorb them while lying down and resting your eyes. Rather than underlining the text, simply stop the tape when you want to make a note. Now if someone would just record philosophy and anthropology textbooks, I'd be all set!
   
3. Discover independent study.   Your college may offer independent reading courses in addition to its regular curriculum. The first semester I was sick, my independent study in Buddhist Philosophy saved my life. I was able to read at my own pace without the pressure of a syllabus, and I met with my professor one-on-one instead of attending long, tiring classes. In fact, I got to know him much better than I would have if I had been just another anonymous face at his lectures. Some colleges will even let you design off-beat independent study projects. Why not get biology credit for researching CFIDS?
   
4. Embrace pass/fail.  Many colleges will allow you to forgo the regular grading system and take at least one class per semester pass/fail. Indeed, I have started to take every class pass/fail. This grading system really removes the pressure. For a computer science assignment last year, I was simply too exhausted to make my program spit out the proper code of ones and zeros. I handed it in anyway, and still passed.
   
5. Don't compare yourself to your energetic peers.   Living with CFIDS is especially difficult when you are surrounded by healthy, energetic people in the prime of youth. In addition to carrying a full course-load, most of my friends also work part time, do community service and exercise daily. If you can barely walk to the mail room, you are bound to get depressed by comparing your peers' accomplishments to yours. To make the contrast less stark, find some friends who don't throw themselves into achievement but enjoy low-key activities like watching T.V. You might also consider passing on lessons about pacing to your high-energy friends. For example, a friend recently told me, "Today I spent six hours in the computer cluster, five-and-a-half of which were productive work!" Rather than congratulating her on her achievement, I replied, "I'm glad you gave yourself a half hour break."
   
6. Check out campus shuttle services.  When you are too tired to walk and too foggy to drive, why not be chauffeured? Your school, like mine, may have a free van service available to students who live off-campus. Find out if you can use it not only to travel between your home and campus buildings, but to off-campus sites like your friends' houses or even a nearby grocery store.
   
7. Make friends with the college health services.   Having an ally at your university infirmary is indispensable. You may need to consult with the CFIDS specialist in your city, but a general practitioner at your infirmary can see you for routine care, help you with referrals and see that your academic needs are met. Plus, the health services office is a lot closer than most medical offices - especially when you're beat. Finding the right doctor, as always with CFIDS, can be tricky. After a couple of false starts, I came armed with books and journal articles on CFIDS and finally found an infirmary doctor to care for me. In fact, she became so interested in CFIDS that she did her own research, took on several other PWCs and called a special meeting of health care providers to discuss CFIDS.
   
8. Milk your student discount.   See if you can use your student discount all the time, not just on certain days (when you may be incapacitated). Case in point: My local grocery store provides a 10% discount to students on Tuesdays. Unfortunately, if Tuesday is a bad CFIDS day, I can't go shopping and end up paying more the next day. However, I pleaded with a clerk at the market and now I get the discount on other days as well.
   
9. Take advantage of your career planning services.    Your career counselors are trained to find jobs tailored to your needs and interests; to them, illness is just another individual circumstance. Initially, I didn't think my disability would allow me to do any work at all. But I thoroughly explained my limitations to my counselor and she came up with several novel ideas for part-time work which I can do at home after graduating. Your career services office can put you in touch with alumni in your field of interest, provide information on using the Internet for job searches and help you make the most of a resume rendered sparse by CFIDS.
   
10. Know when it is time to go home for a break.  Part of surviving college is recognizing when you need to escape the stressful life at school and retreat home. A few times each semester - when the dishes are stacked in the sink, the trash is overflowing, or I have to write a paper - I hop on the bus for the five-hour ride home. There, my parents help take care of the daily chores of life so that I can throw myself into, say, Middlemarch. A few days without having to cook or clean frees up enough energy for me to write even a 10-page paper.

    Even though CFIDS may have ended your years of all-night studying and late parties, you can still be a student, and - more importantly - a graduate. You are at college because of your smarts; use them to get the best from the system. And there is at least one perk: like me, you can be a senior for a few years.