I was 13 when I was diagnosed. I had really bad flu that lasted about 3 weeks, and i never seemed to get better afterwards. After about 4 months of just collapsing and flopping everywhere like a dead fish and being in so much pain, the doctors referred me to the pediatrics department at the hospital. No-one really took me very seriously, they thought that it might just be a hormone imbalance because I was still growing. It took about 6 months in total for me to be diagnosed, and it has been three years and i'm still ill (which is really rubbish -_-).
The worst thing about it was not being able to control my body. Some days I would be fine, and then the next I wouldn't be able to move from the fatigue and pain. It got really bad when I went on a school trip at a summer camp. I was told that I would only do the activities that I was able, however the instructors didn't believe that I was ill because I didn't show any signs of illness. At that point there were also other classmates that were visibly ill so they thought that I was attention seeking. About a three days into that trip due to the stress and exhaustion my hair started falling out. Things started to go downhill from there. I've been in wheelchairs and gone to physiotherapy, and in the past few months I've slowly started to get better-ish.
What has really helped me is that in my class there are other people with varying illnesses and disorders (to name a few: bilateral telopes, bi-polar, hyper mobility etc) We have about 10 people in my class that are known as 'special' (including me), we also have some dyslexic people so we are known throughout the school as the 'special class'. It has been an ongoing joke between us when comparing medication and how many treatments we've been to and that put together we have tried all of the different areas in the hospital. Being with them has really helped me as it makes me feel like there are other people that need help with some things too. With this being my GCSE year (year 11) we've organised study groups to make sure everyone has all the notes for the subjects as lots of us have to miss some lessons due to being ill. My aim for this year is to do all of my exams, and to hopefully pass! I will post my results when I get them in August (whether they are good or bad), do any other students out there have any advice for coping with exams and school? I would be really grateful Best of luck to all of you!