Telling others

The earliest stages of your illness are likely to be some of the most challenging. Not only are you feeling awful, but you are struggling to come to terms with the illness and its impact on your life. Those close to you will also be feeing worried and confused by your deterioration in health and will have lots of questions.

We know that a lot of people find it easier to give family and friends a leaflet or booklet that can answer all their questions and reduce the need for them to explain everything over and over again. See All about M.E. - A guide.

Work poses a unique set of problems, unless you are very lucky and your employer already has an understanding of the illness. Again, many people find it easier if their employer can read information on the illness and how it may be affecting you.

One of the hardest things that people have to deal with is the disbelief and the myth that goes with the illness. Thankfully more people are well informed than say 10 years ago but it is still not uncommon to meet negativity or dismissiveness when explaining that you have M.E.

View a selection of related articles from past issues of InterAction, our quarterly magazine.

Real experiences

Fiona
'When I first became ill, the reaction of some of my friends and family was nearly as hard to deal with as the illness itself. My sister-in-law started saying that I wasn't really ill, I was just attention-seeking. My parents had a friend who was a GP who assured them that it was all 'in my mind'. In the end, my mother supported me but my father believed his friend for several years, until M.E. became more acknowledged. My husband was fantastic and most of my friends were great too - they have stuck by me and continue to be supportive. However, I found it hard to deal with people who couldn't wait to tell me how they'd read in the paper there was no such thing as M.E. In the end I coped by ignoring people who chose not to believe me, as it was their problem not mine.'

Suzanne
'I've just started a part-time college course. I've had M.E. for five years, and am restricted to an automatic wheelchair, with very limited walking abilities. I told them I had M.E. on the disability part of the application form. The tutor was extremely helpful, and at no time did he appear to be judging me given that I was in a wheelchair. He made clear what was expected from me, and I talked about my needs. All of my classes have been arranged so I am on the ground floor with wheelchair access and my course is spread over two years, to make it less tiring. The special needs tutor sees me every day; I have been lent a dictaphone; and can have a laptop if needed as my writing deteriorates through the day. The college has certainly gone out of its way to help.'

Information first produced November 2003. Currently under review.