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Emma: “I'd like every parent to benefit from the support we have”

Emma: “I'd like every parent to benefit from the support we have”

Emma's son William has M.E. She shared this story with us in November 2017.

Our son William is just 10 years old, and has been ill for the past 18 months. Just nine months ago he was diagnosed with M.E./CFS. In that time he has gone from being a happy and active little boy who had the odd tired day, to now being unable to leave the house, or attend school at all, and it has been heart-breaking to see.

William feels the difference between having M.E. as a child and not an adult, is that M.E. is more recognised as an illness for adults, and that people would be less likely to think that the symptoms were anxiety, or not real, in an adult.

I think he means the experience he had with school, who didn't believe it was an illness and would come round to the house to persuade him to come to school when he was unwell. He said that if he were an adult then his boss would never do that to an employee, and he does have a point!

He also said - and this does reflect badly on me I'm afraid - that it would be easier if he was an adult with M.E. because then he wouldn't have someone nagging him all the time, and that he would be able to get well when he was ready.

Children with M.E. report incidences of disbelief and bullying – not by peers. Recently a young person told us “I said I couldn’t do the activity I was too exhausted and they repeatedly said ‘Well just try’ so I did and now I can’t go out at all. I’m trying to manage my activity but they [school] just won’t let me.”

We know children as young as four years old have been diagnosed. These young children don’t have a voice that can be heard, they rely on their parents who are frequently told they are imagining the illness. They are faced with disbelief, told children can’t get M.E., and that they should “just give them more encouragement.”

As you all know, in the worst cases, parents are fined or taken to court for poor school attendance or worse still threated with child protection proceedings if they don’t comply.

As a child, you quickly become isolated. Your friends don’t understand and one mother was told, “I’m sorry but I don’t want my son to catch it.” Children aren’t being cruel or unkind – it’s simply that their lives move so quickly, days fly by and new friendships are forged even when the parents are trying to be supportive.

Anxiety is a big issue for many children and why wouldn’t it be? You are suddenly unable to do all the activities you loved: swimming, football, cycling, even just hanging out with friends is too much to cope with. Going to school is noisy, bright jostle-y and, on top of that your brain, isn’t working the way it used to. You can’t go on holiday but worse than that neither can your brothers and sisters so you feel responsible.

Getting the right support

Soon after his diagnosis, I went on the internet, trying to find out what this diagnosis might mean for the future, and what we could do to help him recover. I came across Action for M.E.’s Children’s Services, with a wealth of information for parents just like us, and a telephone number to call.

That telephone call lead me to Mary-Jane [Willows, Action for M.E.’s Head of Children’s Services], whose support, advice and wealth of knowledge has been invaluable to all of us as a family. I really do not know where we would be without her. She has supported us through difficult battles with William’s school, has pointed us in the direction of specialist paediatric M.E. support, and always been there to listen when things have been tough.

I would like every parent of a child with M.E. to benefit from the support that we have received, so that they have someone in their corner every step of the way through this debilitating and frustrating illness.