Living With CFIDS
Preparing for college and independence

By Rebecca C. Moore

Attending college when you have chronic fatigue and immune dysfunction syndrome (CFIDS) may seem like a far-off dream, but a number of young persons with CFIDS (YPWCs) are making that dream their reality. It’s not easy, but for most of the students I know, the struggle to attend classes, socialize and live independently is well worth all of the challenges. Here are some suggestions to help you prepare for college and independence, based on my experiences as a YPWC and college student.

Choosing a School
Your high school guidance counselor, books like The Fiske Guide to Colleges, and contact with college administrators and professors can help you evaluate factors such as the academic programs of the schools you’re considering. Young persons with CFIDS may wish to consider whether each college or university they apply to provides a supportive environment for persons with chronic illness.

Learn about the financial aid programs of the school. A few colleges have strict work-study policies, requiring all students to work at jobs while they are enrolled in classes, even if they are chronically ill. Find out whether the financial aid programs of the schools you consider are flexible enough to help you make up for not being able to work while you are enrolled in classes. Also, some schools have special funds set aside to assist students who require extra time to graduate and lose their eligibility for federal financial aid.

Learn about the school’s office for students with disabilities, either through phone contact with that office or through an on-campus visit. Make sure that at least several of the schools you apply to have programs which you are comfortable with, where a specific staff person is available to counsel students on how they can obtain the accommodations they need.

Some schools have comprehensive programs serving students with disabilities, in which an office with multiple staff persons aids students with testing accommodations, tutoring, counseling, note-takers, the ordering of books on tape, and more. In this environment, many of your requests to professors will involve accommodations being provided by this office, where working with disabled students is routine. Other schools have less developed programs, where a single staff person (often part time) counsels disabled students about how to advocate for themselves and, occasionally, intervenes on their behalf. In this environment, your professors make the time to aid you with testing accommodations; you ask your peers for copies of their notes; and you usually advocate for yourself with administrators. Each program has its pros and cons. How comfortable are you when speaking about your needs? No matter which type of program your university has, you must learn to be your own advocate, since this is what you will have to do as a working professional.

Find out how other students with chronic illness have fared at the universities you are considering. The staff in the office of students with disabilities or the dean of students office may be able to tell you whether other students with chronic illnesses have attended their school recently, to what degree they were disabled, and whether they found an understanding reception with their professors, peers and administrators. These offices may even be able to put you in touch with current disabled students on campus, who can give you a first-hand commentary on attending that school while coping with a disability.

Visit the school and consider its layout and location. Think about the practicalities of life on campus: Are there many hills? Is the campus wheelchair accessible? Are the buildings very far apart or on opposite sides of a busy highway? On a bad day, could you walk from the dormitories to the cafeteria for all three meals? Is there a pharmacy within walking distance of the campus? What about an ATM or a grocery store? Will you have a car with you? If not, is there public transportation available and would it be easy for you to use it to get to a doctor’s appointment if you were feeling sick? Depending on the degree to which CFIDS limits your stamina, issues such as these may be important as you consider which schools to apply to.

Before you begin 
Orientation is your chance to make new friends and adjust to life on campus. Since you want to enjoy this time and be free to hang out with your new acquaintances, take care of as many arrangements as possible before you arrive on campus.

Speak with a nurse at the student health center. Explain that you have a complicated chronic illness and ask which physician they recommend that you work with while you’re living on campus. Arrange to send your medical records ahead of time and find out when you can make a first appointment with the recommended physician, to explain your history and current treatments and arrange for any needed follow-up care.

Talk with your CFS doctor about your plans. Decide on the best way to continue treating your CFS while you are at school and let your doctor know that he/she may be contacted by your new primary care physician at the student health center. Discuss the school’s immunization requirements with your physician, the risks and benefits of updating your immunizations, and the options you have if you decide not to update them. Discuss the risks and benefits of getting a flu shot, since if you will be living in a dorm, chances are you will be exposed to the flu during the fall or winter.

Prepare an emergency medical information sheet with all of your critical information, just in case you have to go to the emergency room by yourself. Keep a folded copy of this sheet in your wallet, coat pocket and backpack, so that you will always have a copy with you when you go out. Three weeks into my first semester at school, I went to the hospital in the very early morning. I speak from experience! Preparing a sheet with your name, address and phone number; your parents’ names and phone numbers; your diagnoses, allergies, current medication doses, major surgeries or hospitalizations, physicians’ names and phone numbers, and insurance information will make your life much easier if you have to go to the hospital by yourself.

Re-establish contact with the directors of programs for students with disabilities to let them know that you will be attending their college or university. If you haven’t already done so, find out what documentation they require and arrange for any necessary neurocognitive testing. If you plan to contact other university offices about disability issues, let the director know of this, in case he/she has any advice to share. Prepare a list of the accommodations you expect to need (consider issues such as your academic load, financial aid/work-study requirements, housing, diet, testing accommodations, books on tape, tutoring, and note-takers). Share this list with your CFS doctor and ask him/her to write a letter to the director of programs for students with disabilities, explaining your condition and the accommodations you will need.

Contact the school’s director of food services. Briefly explain that you have a chronic illness and that you’d like to know whether they have accommodated students with chronic illnesses before. For example, will they allow you to bring healthy leftover food, such as containers of soup and salad, back to your room after lunch, so you can save energy by eating dinner in your room? If you’re really sick, can your friends bring meals back to the dorm for you? If you have food allergies, set up an appointment to meet with the director of food services and the chefs to explain your diet. Be sure to prepare hand-outs to help them learn to read labels for the foods you must avoid. A list of the foods that you can eat is helpful, too. Get to know the cooking staff and they will look out for you.

Call the housing office and the physical plant (buildings and grounds office) to arrange for housing accommodations such as having a single room. Make sure it’s located on the first floor, that the dormitory is not known for especially loud parties and that it is close enough to the dining hall and academic buildings for you to handle the walking on a bad day. If the dormitory is not air-conditioned, consider getting permission to bring an air-conditioner to place in your window and make sure you have the tools you’ll need to install it.

Consider bringing a computer. When you aren’t feeling well, you’ll appreciate being able to work in the relative quiet of your dorm room, being able to work in brief sessions whenever you feel able and not having to walk across campus to a crowded computer lab.

Your first semester 
Arrange ahead of time to have classmates audiotape lectures and share their notes with you on the days when you are too ill to attend class. If you confide in a few friends about your disability, they will probably be willing to help get your tape recorder to your classmates on the days when you are sick. If you listen to the audiotape while copying the notes, you won’t miss too much.

Keep healthy, prepared foods in your room so you won’t have to miss meals or give in to "junk food" cravings when you really don’t want to. Arrange ahead of time to be able to call on friends to bring back meals from the cafeteria on the days when you feel really sick.

Schedule some non-tiring, fun activities. Find a campus organization which meets regularly whose activities you can handle, so you can count on some socialization and non-academic activity. For example, read to neighborhood kids once a week or sing in the school chorus while sitting down. Be sure you have some fun in your life!

Live on a schedule. I know, it sounds awful. However, think about it: When you feel especially alert, or when your class assignments are really overwhelming, it can be tempting to put studying ahead of getting adequate sleep, good nutrition and exercise. The same thing is true for the times when you just want to have fun with your friends, no matter how you are feeling. The problem is that if you shortchange yourself on sleep, food and exercise, your exhaustion, hunger and stress levels may lead to colds, flu and CFS flare-ups. Your health will be less predictable and life will seem more stressful. There are no guarantees, but it seems likely that if you make it routine to take care of yourself, always getting enough rest, you will accomplish more in the long-run. For me, the easiest way to do this has been to keep a regular bedtime and wake-up time, so that I am accustomed to seeing my friends during the day and am used to missing out on late night activities. It sounds sad, but getting enough sleep is what got me through a challenging first semester. When it was over, I was glad that I chose to take care of myself in order to be able to see my friends and attend classes during the day.

Attending college is not easy when you are ill, but when you realize all that you are capable of doing, the challenges seem worthwhile. Good luck!