Theo's Story: "I watched my brother's battle with M.E. so I knew what I was in store for"

Theo tells us about having his life put on hold and why conversations with friends aren't easy anymore.

It was just before my 17th Birthday that I started getting ill. I thought it might be some sort of virus but the longer it went on, the longer I thought it might be something more serious. I was formally diagnosed with M.E. around six months later.


I had watched my brother's battle with M.E. so I already knew what I was in store for. The consultant who diagnosed me said at the time “don't worry, it's not like you're going to die” which I supposed was true but knowing that I would be ill for many years wasn't a very comforting thought at all.


It was a pretty upsetting time. I should have been preparing to apply for university but I could no longer go to school and I missed sixth form.  Instead, I faced years of chronic illness and pain while my life was being put on hold.


Around this time, I began finding out who my real friends were. There were the friends who knew that I was too unwell to leave the house and would come over to visit me. It was kind of them, especially since I couldn't talk with them in the same way as I used to: extreme fatigue made it hard to follow conversations and cognitive impairment made it difficult to respond quickly. Then there were the ‘friends' who I lost contact with all together – they didn't seem to want to know anymore.


My mum and dad didn't like leaving me in the house alone for too long so that meant that they had to stay with me. My parents were no longer able to travel while I was ill and I could no longer go with them. My condition had a huge impact on my mum and dad but to be honest, it's impacted on the whole family.


It is hard living with M.E. but I try to focus on things that I enjoy like playing with my dog and watching the football on T.V - especially when my team wins! When I found out about the Young People with Long Term Conditions Project discussion group I thought it would be great to attend. I met a lot of other young people with different conditions but the same emotions and struggles. Having the support of other people like myself has given me a real confidence boost – I feel like I am not alone anymore. 

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