Raising a child with chronic fatigue syndrome

Joe was diagnosed with chronic fatigue syndrome (CFS/ME) when he was just seven-years-old. Here his mum Teresa tells her story about raising a child with CFS/ME and how Joe's optimism gives them hope for the future.

We noticed that Joe was getting increasingly poorly the summer before his diagnosis – he kept getting headaches, he really lacked energy and it was always a struggle for him to shake off colds. Our GP diagnosed post-viral fatigue syndrome and referred him to the community paediatrician who confirmed that he had ME.

I knew about the condition because I have ME but I had no idea that children as young as seven could get it; it came as a real shock. Because of my experience with the condition I was very aware of how awful Joe must be feeling and the impact the condition was going to have on his life.

Changing lifestyles

Joe's life has changed considerably – he went from being a really active boy who loved all sorts of activities, like swimming and karate, to being able to do hardly anything. It was a real shock for him but I'm amazed at how resilient he is.

It's been a struggle for our family because we have to fit our lives around Joe's needs and I am obviously unable to work so money is very tight. Due to the fact that it's such a difficult illness to understand, we've been unable to receive any benefits or financial help, which makes it very difficult financially.

For more than a year there were days when Joe felt so ill and was in so much pain he could barely move. We weren't able to go anywhere and Joe couldn't really go to school. He would try to go for a few hours, a couple of days a week but would then have to come home and crash out.

Managing the condition

Joe's health has slowly improved and we manage Joe's condition through pacing, which means he does a little activity and then rests. If we plan a day out, Joe needs to rest a few days before and after. He manages to go to school for just over two hours a day at the moment.

I think Joe's condition has isolated him from his peers because he can't do PE or join after-school clubs and only goes to school for a short while – I think his confidence has suffered as a result. His close friends have been great; they've always looked out for him and supported him and he's never lost any friends because of his illness. It's very important that his friends have always been there for him.

Sometimes activities for Joe just require a bit of forethought – we go out in the garden as much as we can, have fun playing board games and choose outings to places like the cinema where he can sit down. You need to grab the opportunities and never take it for granted when he's having a good day.
One of the problems we have with Joe is that when he is having a good day and feeling a little better he won't stop, which is why he crashes.

Understanding ME

We've had a lot of trouble with people understanding Joe's condition – they'll see Joe running around like all the other kids but what they don't realise is that it's going to hit him in the aftermath. We – and Joe in particular – still face people who believe there is nothing wrong with him and that he's just being lazy.

We've been lucky with the GP and paediatrician we've had, although there's still one doctor at Joe's surgery who doesn't believe ME exists.

The school have been supportive and have put together a special time table for him and we try to work from home to avoid missing too much at school – although we are aware that there is a huge gap in his education.

We've joined things like Action for ME and the Association for Young people with ME (AYME) and there is a fantastic local ME clinic with a paediatrician, occupational therapist and specialist nurse who help us, not only with his illness, but with his education. They've been so helpful at holding our hands when we've needed it.

Keeping positive

We've never allowed ourselves to get down about the situation – Joe is such a happy kid and he really gets on with things. The only time it can be upsetting is when you think about how much fun your son is missing out on.

We take one day at a time and we feel confident that he's going to get better – we just can't predict when that will be. Sometimes, during a good spell, we get really excited but it can be really disappointing when he goes downhill again.

My advice to other parents in this situation would be to never give up hope that your child is going to get better. We take our motivation from Joe; he's so optimistic and cheerful.

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