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Here are some personal experiences of the attitudes which some children with ME have met to their illness. Send in any others - good or bad - for us to consider adding to the list. It helps people to know that they are not alone in meeting scepticism, and it also helps them to know that this is not always the case. If someone has been particularly understanding and kind, you may like to nominate them for our Roll of Honour.

Most people with ME find other people's attitudes are very mixed according to what they have picked up from the media.  Some grandparents, for example, are very supportive, whereas others give unhelpful advice about "snapping out of it" and pressurise parents into "not spoiling the child" (see Personal Experiences: Accepting your Illness, also on this site).

In a few cases, even parents are sceptical.  This could be because an uninformed doctor has made a dismissive remark, like the consultant who advised some parents to give their son "a kick up the backside" because he thought that ME was not real and so therefore the lad must be faking it. Needless to say, that particular quote made the Sunday Mirror! Luckily the parents did not believe this particular doctor, nor take his advice - they went to a more enlightened source of medical help.

Of course, sometimes parents just don't like to believe that their child has a potentially nasty illness, which is understandable. They need reassurance that by accepting the reality of the situation they will be able to deal with it and help their child's health improve. You could encourage them to look at this site for information.

This is how Catherine describes other people's attitudes to her illness (she first became ill at the age of 8) and the importance of getting a diagnosis. Don't forget that the diagnosis can be supplied by your G.P.  You do not need a consultant's opinion for the diagnosis to be valid.

On top of feeling ill and unhappy I had to fight against other people's views and opinions of me and my illness. These people included my friends (all but one) most of my parents' friends, my teachers and of course the doctor. All were sceptical of me, especially my friends. None of them were around when I was feeling a little better. It is fair to say, however, that given the circumstances I can understand their doubt. My appearance was that of any other person. I had no spots or visual disabilities that could be associated with illness and the inconsistency of the illness meant that one day I could be feeling better and the next I could be ill. This suggested to them that I could be ill when I felt like it and that the unpredictability of my ill health meant that I was controlling it.  We now know that ME can be unpredictable and inconsistent and when I look back on those times, I think how much easier life would have been if I had known then what was wrong with me.

Attitudes of parents can be confused. They want to do the right thing but don't always know what that is. Professionals also display a range of attitudes. This is how Dr Alan Franklin describes it:

At the beginning, [parents may not] believe this is a real condition and they think that the child should be able to snap out of it. But the closer they are to the child, the quicker they realise that the child is not putting it on…..

There's quite a range of reaction, particularly on the part of fathers. There are fathers who believe the child is just being wimpish and won't try. There are fathers who eventually recognise that the professionals have got it wrong [the diagnosis or treatment] and then they get even more angry. There are fathers who really believe that there's something desperately wrong with their child and that something's got to be done to make him perform normally….they think that there should be something, surely, to put [the child] back on form again….

Schools and teachers can vary enormously. When there was a change of head teacher, her school's attitude became totally positive.

Things at the school have improved. The new head's been wonderful - he's come to educational meetings with me to try and help me with the future. He's wanted to help me. A while ago, I wouldn't even have considered going back into the sixth form at that school, I wanted to get as far away as I could. But now I'm considering staying on.

The English teacher didn't know anything about ME but during the week, since I saw him, he'd read up on it. I couldn't believe it.

On Thursday he brought three of his students down to help me with the oral examination and they were asking me questions on it. They were just so accepting….And this teacher is so relaxing, he jokes! I've never seen that in a teacher because all I've ever had from teachers is "Pull your socks up, Jessica."

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