by Jane Colby Executive Director of Tymes Trust On occasion, children themselves can be their own worst enemies - are you??! Children sometimes deny their symptoms to themselves and everyone else for as long as possible, even after the diagnosis, pushing themselves on and on and hoping against hope that the illness will go away. Sometimes, if they are lucky, it does. But often all that happens is that they use up all the energy their body needs to heal itself in struggling to behave "normally". "These patients must accept that they are ill," says Dr Darrel Ho-Yen, an ME expert in managing ME. He says this because only when you accept that you need to change your busy lifestyle for something more manageable do you begin to stabilise your condition and stop the never-ending circle of: doing too much, getting ill, resting, feeling better, doing too much, getting ill, resting, feeling better, doing too much….. What leads us to deny that we are ill? Generally it's because we'd rather not be. It can be frightening and we don't know if we can handle the truth. But also, our society makes it seem shameful to be ill or disabled in any way, and people are often praised for having lots of energy as if it somehow made them a good person. For a long time I did not ask for an orange badge because I was ashamed that I needed one. It was when I realised that I was disabling myself and making myself ill because of having to walk too far all the time, that I could see how stupid I was being. It also made me look at my own attitudes to other people with disabilities and illnesses. If we don't want to admit that we have a need for an orange badge or another type of help, that can only mean that we don't want to be classed with other people who need help. So what does that say about our own attitudes to disability? It suggests that we think "we" are different from "them" - and we don't want to be like "them". So perhaps we ourselves are prejudiced! It catches you out, a thought like that. No more shame. Respect yourself - and if you need something, get it. Learn to enable yourself, not disable yourself! You'll get better all the quicker. If you'd like to contribute your own experiences to this article, send them in for consideration. This article is the personal experience of a mother who is also the Carer's Contact for TYMES. It shows that in accepting your illness and being truthful about it, you can help your family and everyone else around you who don't know how you feel. They can become confused and argue with each other - and you can stop that happening by being honest. It's the kind thing to do for relations who love you. Is it just chance that in the past couple of weeks, since the beginning of the Autumn term, there have been four similar telephone calls from mothers of children or young people with ME? The commonest scenario is that the young person with ME had perhaps not seemed too bad during the Summer holiday and so, at the beginning of the new year, arrangements had been made for the young person to go back to school, maybe part-time at first. What has been entirely consistent is that the young person's health soon deteriorates, often the school sending the youngster home after half a day. This, from a mother's point of view, is utterly disheartening, but what makes it all so much worse is the conflict this creates. Perhaps I should go back a step and say that 85 - 90% of parents who call the TYMES carers' contact numbers are mothers. The carer will often describe a lively, outward going youngster whom they now see in retrospect had begun to show signs of exhaustion, frequent sore throats, aching limbs and generally flu-like symptoms. I have noticed that mothers very frequently go on to discuss the difficulty of coping with disbelief in the reality of the illness. One of the commonest and most destructive is the disbelief of fathers and close relatives. I hear such similar descriptions of how the young person may be too unwell to do anything all day and when the father comes home they get out of bed and seem quite bright. The logical implication is the child's just "pulling the wool over your eyes." Grandparents and other close relatives can be amongst the harshest critics. In trying to unravel this mystery what I came to realise was that the fathers who did contact me about their child were often people who were at home with their child or who shared the main caring role. In our society it is still mainly the mother who does the emotional work and therefore recognises the child's distress. It may be that the child tries to put on a good face for people other than the main carer. In our house we called it 'The Jekyll and Hyde Syndrome'. Katie the sufferer often felt very ill all day and in a lot of pain. When her father came home or a visitor arrived she would put in a brief appearance. She would put on a super human effort to appear lively and chatty, then would disappear back to bed saying she was in the middle of writing letters. Inevitably the comment would be "she seems much better today". I would be left muttering darkly about how she had been really poorly during the day. But I would then be seen as the neurotic, over-protective mother. I would have spent much of the day trying to keep up her spirits, listening to her distress about missing school, missing her friends, never being able to catch up. On the other hand I could be amazed at her stoicism in coping with pain from glands swollen like small eggs on the back of her head and neck, from sweating from head to foot, but with a sub-normal temperature ~ a weird variety of symptoms. My tolerance of being told she was "pulling the wool over my eyes" at the end of a day like this was zero! One can sympathise with close relatives who see the main carer being worn ragged by the demands of a sick child, but it only makes matters worse that we are seen as being conned. I actually felt a sense of relief mixed with sadness when "Grandma" died. I thought I am not going to have to cope with her comments like "you'll both feel a lot better when you get a bit of sunshine on you." (Inspite of the fact that Katie could not cope with light). It's such a lonely job looking after a sick child, and particularly one with ME as the disbelief on the part of professionals feeds into the belief system of the other members of the family. Glenys Thomas
First published in TYMES Issue 22, Autumn 1997 Described by Dr Anne Macintyre as "a little gem", Jane Colby's book Zoe's Win was especially written to help young people accept their illness and learn to manage it.
Recommended "as a starting point for families whose youngster has just been diagnosed ... easy to read and very accessible throughout".
Special Children Magazine
"The book is well thought out and very well put together ... sections are short, informative and memorable. I greatly enjoyed reading it."
Dr Darrel Ho-Yen
ME Specialist and Author
"Packed with practical advice on how to cope, Zoe's Win advocates collaboration between fellow sufferers, their carers and professional advisers. A truly welcome addition to the ME/CFS literature."
Dr Nigel Hunt
Member, Chief Medical Officer's Working Group on CFS/ME
"I would like to order two more copies of the book Zoe's Win by Jane Colby. I ordered one copy a month ago and thought it was wonderful ... my friends thought so too."
"I loved it. I loved the way she described how she felt when she was bad. It was just like me! She really understands. It was so good to read about another kid."
Megan Robinson (9 years) in the Lyndonville News (Dr David Bell’s online newsletter)
Excerpt from "Accepting what has happened" (page 36):
Usually we don't notice ourselves changing and developing as new experiences are added to old ones bit by bit, day by day. But when big changes happen suddenly, as they can do when we get ill, it's all a bit too quick to handle and we don't feel like ourselves any more.
People often react to this by refusing to accept what has happened at all. They may just keep on relapsing and relapsing because as soon as their symptoms go away they try to be exactly the same person they were before they got ME. [...] Why do people behave like this? Why do they keep on making themselves worse the moment they feel better?
Because they don't like the changes in themselves, they try to pretend that these changes just aren't there.
Excerpt from "How can changing your lifestyle help?" (page 38):
Until people have come to terms with what has happened to them, they can't begin to change their lifestyle - because they haven't yet accepted that it's necessary. So they get stuck in an "up and down" lifestyle - either they are feeling "up" or "down" and they don't really stabilise somewhere in the middle. [...] Adapting and pacing life carefully gives a person with ME the best chance to get strong and well again.
This book contains information for your doctors and teachers to help them help you with this.
In the end, it is within your own control to help your body to heal itself.
Available from bookshops (ISBN 0953733009), online from Amazon, or post-free (UK) from Young Action Online, PO Box 4347, Stock, Ingatestone, CM4 9TE. Cheques payable to the publisher, Dome Vision. Price £7.95 (£1 off a second copy). For orders from outside the UK, please send a sterling cheque. Add postage/packing as follows: Europe £1.25; World Zone 1 (eg USA, South Africa) £2.25; World Zone 2 (eg Australia, New Zealand) £2.55. The offer of £1 off a second copy still applies but add another 50p postage (World Zone 2 add £1). Can also be borrowed from UK libraries or directly from Tymes Trust.