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.
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.
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.
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.
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.
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.
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.
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.
