Don't know how to help

26 April 2012

My brothers are pretty awesome brothers. I love them to bits and yes they can be annoying but they also look after me, cheer me up and make me laugh until I injure myself. The 16yr old one (B) may have EDS but doesn't really suffer much except for when he mountain biked which aggravated his back and wrists. The 13yr old (O) however suffers a lot. He tends to dislocate his shoulders a lot (I'm knees and my dad is shoulder). Me and O also do the smaller joints like fingers, toes, jaw. Its only just started getting bad for him.

He loves to play rugby, I mean we live in Wales and he's male so its kinda the law. I know rugby is a stupid sport for someone with EDS to play but he knows the risks and does get a few injuries but he loves it & he wants to play if for as long as he can. Apparently he told my mum that he's scared because all he can see is how 'Im getting worse over time and knows that its probably going to be the same for him. At least if he's doing exercise his muscles are still going to be strengthened. I was told to quite horse riding and I ignored all doctors and the main reason I gave it all up was I couldn't look after my horse and my school work was struggling. I could still ride.

At school all his friends are amazing, his rugby coach is brilliant. He's been told that he cant play matches due to insurance but he can still go to the training sessions. However the rest of the teacher are not very supportive. He keeps getting told there is nothing wrong with him. He's been in a sling a lot recently due to a shoulder dislocation. He got pushed in the corridor yesterday so him being a teenage boy he pushed back. He was seen by his English teacher and was told that if he was well enough to push someone (with his good arm) he was well enough to write and he should take his sling off and do the writing set in class. I'm sorry but this is ridiculous. They were two different arms and even if he hadn't hurt his shoulder it still hurts a lot to write. I can understand telling him off for pushing someone but don't tell him its all in his head. You're an adult for gods sake.

He has had so many problems with teachers telling him he's making it up that he keeps making up excuses to try and get out of going to school. This happened in his old school when he was being bullied by other children. Now its adults. This is disgusting. He seems so down and I keep getting phone calls from him asking me how to make it better and make the pain go away. Last time he told me that he cant do it because he's not strong like me and he cant just pretend the pains not there and put on a smile. I don't know how to help him. I don't know how to make him feel better because its very likely that he will always have the pain & it may even get worse. What am I supposed to do and say to protect my little brother. If I could take his pain and leave him to be a normal teenage boy I would do it today I love him so much and I just want him to be happy and smile and be able to do what he loves and not have to worry about what's going to make him hurt or not.
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