Preparing for College and
By Rebecca C.
Originally published in The CFIDS Chronicle,
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. Itís 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.
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 youíre 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 schoolís 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.
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.
- Find out how other students with chronic
illness have fared at the universities you are considering.
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 doctorís 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.
- Visit the school and consider its layout
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 youíre 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.
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 schoolís 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.
- Talk with your CFS doctor about your
- 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 parentsí names and phone numbers; your
diagnoses, allergies, current medication doses, major surgeries or
hospitalizations, physiciansí names and phone numbers, and insurance
information will make your life much easier if you have to go to the hospital
to let them know that you will be attending their
college or university. If you havenít 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.
- Re-establish contact with the directors
of programs for students with disabilities
Briefly explain that
you have a chronic illness and that youíd 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 youíre 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.
- Contact the schoolís director of food
Make sure itís 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
youíll need to install it.
- Call the housing office and the physical
plant (buildings and grounds office) to arrange for housing accommodations
such as having a single room.
When you arenít feeling well,
youíll 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.
- Consider bringing a computer.
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 wonít miss too much.
- Keep healthy, prepared foods in your
room so you wonít have to miss
meals or give in to "junk food" cravings when you really donít 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.
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!
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
- Schedule some non-tiring, fun
Attending college is not easy when
ill, but when you realize all that you are capable of doing, the challenges seem
worthwhile. Good luck!