I Became Chief Executive Of A UK M.E. Charity - And Then My Son Was Diagnosed With M.E. Too

22/05/2017 14:04

It really didn't occur to me that it could happen to me. A year into my new role as charity Chief Executive, I had been contacted for information and support by so many parents of children living with the chronic, neurological illness, M.E. And then I became one of those parents myself.

Our youngest son, Danny, had just reached his 11th birthday when he became ill with a chest infection. Despite visits to the GP and all the usual treatments, he never got better. Danny couldn't get out of bed and for several weeks, laid there with the light off. Despite sleeping so much, he was always exhausted, in pain and couldn't tolerate noise: the sound of my laugh made him hurt. Any activity seemed to knock him out and make his extreme exhaustion worse for several days. Even getting to the bathroom seemed impossible.

We eventually had a diagnosis of M.E., an illness also frustratingly known as chronic fatigue syndrome, or CFS. I am so fed up of having to explain to people that Danny is not just tired; if only that were the case. We have lost friends, good friends, when we ran out of patience with explaining that Danny was off school so much, not because he had friendship issues or didn't like his classes, but because he had an illness that seemed to be eating him up from the inside, despite it not really being visible on the outside.

The truth is that my gorgeous, sociable, confident 11-year-old son was transformed from loving life and playing every sport he could, into an isolated, lonely and lifeless child. Nothing we could do could make him better. Being there, alongside him, was the best we could give. The memory of hearing him say he feels he has no place in this world still brings tears to my eyes.

After three and half years, Danny is doing much better. While he's not recovered, he can now do some sport, though only at the expense of school and other activities. From September to April, he seems to get every bug going, probably thanks to his depleted immune system, and a recent stomach bug lasted four times as long as normal. Luckily, we are seeing less and less post-exertional malaise, the symptom that stops Danny's body and brain recovering properly after expending any energy, even just watching TV.

Despite working to raise awareness of M.E. in my professional capacity, I haven't wanted to share my personal experience. The simple reason I am doing it now is because Danny asked me to.

To have done it when he was really ill would have been too hard, and it was really important to me that, as Chief Executive of Action for M.E., I focus on all people with M.E., their stories and their needs. My own experience has certainly helped me in my role but I have had to make sure it hasn't distracted me. M.E. affects children, families and adults in so many different ways and you cannot make assumptions or judgements based just on a single experience.

I'm also speaking out now because there is a need for much better public and professional understanding of the illness. With 250,000 men, women and children in the UK alone living with this condition, you'd think that M.E. wouldn't be so invisible; sadly, that's really not the case.

Danny says the one thing that has really added to his severe exhaustion and frustration is having to continually explain how M.E. is not just feeling tired. By sharing his story, I hope that others affected by M.E. have to do this a little less.

For information and advice about living with M.E., visit www.actionforme.org.uk

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