Attending School With Fibro/CFS

This page is being developed from a post to CFS-Y (a mailing
list for youth with CFS/Fibromyalgia/etc.) that I wrote sometime
in the 1990′s. I’ve adapted and expanded it into an article
about things that I have used to help survive school whilst I had
Fibromyalgia and CFS.

1. Get a general letter from your doctor (address to “To
   Whom It May Concern” or whatever) explaining that you’re
   really sick, that it’s not going to go away next week and that
   you’ll need some leeway.

2. Write a letter *yourself* (or get your parents to write
   it if you can’t manage it) which explains what CFS means to
   you on a personal and practical level. For example
   that you might have to miss classes without warning, need
   extensions on assignments or extra time for exams, or that you
   need to be excused to turn up late to class because you can
   only walk slowly. Add everything that will be relevant to
   school.

3. Make a package with copies of both letters, and a
   little blurb about CFS (you can get them from your local CFS
   Association and/or on the net and print out yourself) and give
   one to every one of your teachers and tutors before
   classes start. Preferably, talk to them all as well and make
   sure they’ve understood.

4. If you’re at college/university rather than secondary
   school, find the “Disability” or “Equal Opportunity” officer
   or whatever they’re called at your institution and make
   yourself known to them. These people should be the ones that
   stick up for you if you’re having trouble with teachers about
   stuff and can’t stick up for yourself, or if the teachers in
   question won’t listen to you. Also, ask the people what else
   they can do that might be of help to you … my university has
   on occasions done all of these things:

   • Made audio tapes of lectures I was too sick to go to,
     and mailed them to me at home.

   • Paid another student to photocopy all their notes and
     given them to me, because the audio tapes weren’t too
     good at showing graphs drawn on the board

   • Provided a wheelchair and somebody to push it when I
     was too sick to walk from my car to the classes.

   • Negotiated extensions on assignments and extra time
     for exams, also use of a computer in exams (it hurts my
     hands less if I can type) when I had lecturers who didn’t
     want to agree to do those things for me.

   • Provided somebody to supervise exams so I could do
     them at home in bed when I had crashed right at the end of
     semester.

   There might be other stuff too. The point is, there’s
   lots of things that they can do to help, some of them
   you might not even think of yourself.

   My usual tack with the disability service people is to go
   in to them and say, “I’ve discovered problem X, I thought that
   if we did Y or Z that might help, have you got a better
   idea?”. Sometimes they do Y or Z with forme, and
   sometimes they say, “Hey, wouldn’t T work better?” and we do
   that.

5. Remember, that it’s illegal under the
   “Americans With Disabilities” act (there’s a similar law here
   in Australia, and in the UK, and most other first-world
   countries) to discriminate against somebody who is disabled -
   which includes somebody medically disabled by CFS,
   Fibromyalgia, etc. By law, they have to do
   things like wave attendance requirements and give you
   “reasonable” help in the course. If some lecturers are giving
   you grief, try to get somebody from the Disability service, or
   somebody else who will stick up for you and knows about CFS
   and the law, to go and talk to them.

6. Away from stuff others can do for you, and onto stuff
   you can do for yourself … Make a timetable for
   yourself and do a little bit of study all through the
   semester, don’t leave it until exams and due dates are looming
   – “normal” people might be able to get away with that, but if
   a YPWC tries to do it, you’ll probably end up crashing.

7. Be sensible and don’t do stuff that’s going to make you
   crash. If you could stay up all night and finish an
   assignment (but crash), or you could go to sleep and not get
   it done, then sleep. Making yourself really sick is
   not going to helpfull in the long run. If
   you find yourself in that situation, it’s time to take a visit
   to the lecturer, the tutor and/or the disability service and
   explain that you were too sick to finish something and could
   you have an extension. Preferably, try to ask for extensions
   before things are due – lecturers are less grumpy about it
   this way!

And remember … you will most probably hit a few people at
school who are really nasty. I had the experience in first year
University of a lecturer who wouldn’t give me the notes I needed,
eventually I got the disability officer to visit him, and he got
a very long lecture about discrimination. He agreed eventually
to give me the notes, and when I went to collect them he spent 45
minutes telling me what a stupid idiot I was, and how I was
scumming off society and not really disabled and a whole lot of
other shit. It really upset me at the time, but I got him back
by topping his course (it was doubly good – it was computers
science and no female had topped that course before).

Anyway, the point was that although you might meet some
people like that, most of the people really want
to help you, and if you explain exactly what’s going on they’ll
do their best.