ME sufferer

Age: 26

Diagnosed: 1992


I became ill in 1992 when I was twelve. I do not remember any real trigger but it was a very stressful time for me with lots of problems at home. Over the next few years, I would visit the doctor every now and then but was never taken seriously. In fact on many occasions I was treated with open hostility and disrespect. To have any tests taken was a battle. My symptoms were put down to either my age (puberty) or to "problems at home". To be undermined and disbelieved consistently by professionals who were supposed to help me was utterly distressing for me. I just could not understand it. My self-esteem took a real battering.

Eventually in 1995 when I was fifteen I was diagnosed with CFS and was advised to rest and not push myself to go to school. I went to school part-time and eventually left at 16 with a handful of GCSEs. My school was also very hostile towards me and tried on many occasions to get me to leave. They even found me a place in a school for people with disabilities without discussion or agreement from me or my mum.

I took some time out and eventually started to improve. I had a full-time job and lived a nearly "normal" life. Although I did still struggle immensely - but in secret: I was so ashamed of my previous illness that I tried to convince myself I had never really been ill. The years of being rejected by the medical profession and made me feel ashamed and scared, and I would doubt myself so much. I avoided going to the doctors wherever possible as I was so scared of being disbelieved.

In 2004 when I was 24 I became acutely ill with the Epstein Barr virus and was admitted to hospital with severe anaemia and jaundice. I had become so ill but did not seek advice from my doctor because my fears of being disbelieved are still with me to this day.

I recovered from the complications of this virus and tried to carry on as normal. After all, the consultant said I was fine now. However, I was not. It is now two years later and I have had to give up my university degree, my social life, and am unable to care for myself adequately. I am scared that this is my future now. Will I always be single, childless, jobless, penniless? Will I never be able to make plans, visit friends, go for a jog...?

I have applied for DLA (probably one of the hardest things I have ever done) and have been rejected, despite being mostly housebound. Do these people think that I want to be like this? That to give up my future is an easier option? Or do they think that behind their backs I am secretly earning money and living it up? Why do they not think that it would be a good idea to ask for a report from a GP when assessing my claim? How do they think a visiting doctor can assess my capabilities by sitting in my lounge with me for an hour? So many questions and so few answers.

I am lucky that I now have a GP who believes me and treats me with respect. And as an adult I now have more confident in the knowledge of what is normal for my body. As a child who became ill at the age of twelve, I did not know if it was normal to feel the way I did, and when being doubted by so many doctors I learned to constantly doubt myself too. It seems I still do this to a certain extent, as allowed myself to get severely ill without seeking help.

I now cope day-to-day by feeling numb. I think I feel sad about what I have lost and scared by what my future holds, but I am not sure. If I dwelled on that everyday I would be very depressed by now. Instead I just feel numb