Saturday, 21 May 2016

Kat's perspective: The unique challenges faced by young adults and children with ME

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

Last year Kat kindly wrote a guest blog post called How ME has changed my life. I am so glad to have her back again, to write another post for me. This time Kat has chosen to write about her experiences of being a teen and young adult with ME, as well as the experiences of others who she has come across who have also encountered ME at a young age. 

About 1 in 50 sixteen year olds are thought to suffer from ME/CFS according to a recent study. That’s a huge number given the lack of support and understanding there is. As well as having ME for the last 15 years, I’ve volunteered for an ME charity for about 10 years. The youngest child I’ve personally come across with ME was six-years-old. I’ve heard of childrenas young as 2 with it too. It’s always struck me that it must be incredibly difficult to be ill so young. How do you explain to a two-year-old that they need to stop playing now and rest or they’ll feel even more poorly later?

Young people with ME face many unique challenges. Sadly, I think one of the worst is the threat of Social Services. You would think that suffering from a debilitating illness like ME would be enough bad luck for anyone, but the disappointing fact is that some parents are then accused of abuse. I met one mother who was told by a social worker that she only kept her two children at home because she was lonely, just because the social worker didn’t believe ME was a real illness. I can’t tell you the relief my family felt when I turned 16 and was no longer under the looming threat of Social Services. I can’t think of anything that would have been worse for me when I become ill than being taken away from my family. I can only imagine what it must be like for those loving and devoted parents who are doing the best they can to support their ill children to then be accused of making it up, imposing a fake illness on their children or even abusing them. It’s called Fabricated or Induced Illness (FII) and affects fewer than 50 families a year, but hundreds of families of children with ME have been probed by Social Services looking into whether they suffer from FII.

Getting an education is so difficult when you have ME. It’s so embarrassing to have to keep asking your friends if you can borrow their books so you can catch up on what you’ve missed. It was even more embarrassing when I started at college and I had to ask people who I had just met and barely knew. I think for many people one of the main problems is the pressure to keep up with everyone else. I wanted to do as many GCSEs and A Levels as all my friends were doing. Having finally cut back to something that was manageable (just four GCSEs and one and half A Levels) it then made it even more difficult when my school and college tried to push me to do more. I wanted to do more and there were so many people telling me that I should do more that it was really hard not to listen and do what was right for me. Sadly, it’s quite common for people with ME to end up doing too much which causes their ME to crash. When I was first ill I was told by a paediatrician to ignore my symptoms and try to get back to full-time school. Trying to follow his advice caused me to become practically bedbound. Unfortunately, this story of an unhelpful medical professional causing a massive deterioration in health because of bad advice and lack of knowledge is one that I’ve come across time and time again.

If you’re not well enough to go to school/college/uni, then your options are very limited. I have a friend who is only able to study her A Levels because her grandparents are willing to pay a small fortune for a home tutor. Many of my friends with ME have had to do a Degree with the Open University as there aren’t really any other options available for home study. Fortunately, that’s worked out as a really good option for me. I’m just coming up to the end of my final course, but it’s going to have taken me 7 years to complete my Degree because I’ve had to do it part-time. I’m thrilled to finally be finishing, but because it’s taken so long I feel quite a lot of pressure to do well. Nearly all of my healthy friends when to uni and got a Degree in 3 years, so as it’s taken me more than twice that long I want to make sure I have something to show for it! It was the same with my driving test – most of my friends passed when they were 17, but I wasn’t well enough to learn to drive until I was 28 so I felt quite a lot of pressure to do well and pass first time. It seems silly, but it feels like there is a need to compensate for it taking me so much longer to do things.

There seems to be a huge pressure for young people to conform and do what everyone else is doing, whether that’s going to uni or moving out and living on their own. I’ve known people who spend all their energy on just surviving; getting meals, buying food and doing the washing. All because it was so important to them to live on their own, even if that means they have to sacrifice getting an education, having a job or seeing friends in order to do it. I’m lucky enough that I get on really well with my family and that I enjoy living at home. It’s meant that I’ve been able to concentrate my energy on getting a Degree with the Open University, going out with family and friends, and (most importantly) actually getting better. I’m grateful that I’m one of the lucky ones as I’ve known plenty of people who haven’t had supportive parents. One friend had to move out as her parents didn’t believe she was ill and kept pushing her to do more. If she hadn’t left, then they almost certainly would have caused her to relapse.

Most young people are quite spontaneous. They can make plans at the last minute whether they want to go out at the weekend or even later that same night. Having ME means you can’t do anything at the last minute. If I have an essay to write then I need about 10 days so I can work, rest, work, rest, etc. in order to get it done on time. If I tried to do an all-nighter it would bring on all my ME symptoms and probably mean that I failed my essay. If I’m meeting up with my friends then I need to know when, where and how long we’re going to be. If we go to the cinema, then I can’t just pop out for pizza afterwards if we haven’t planned it. For many people with ME everything has to be planned down to the smallest detail, including things like how far it is to walk from the carpark, and where are there places to sit.

Style and fashion are important to many young people, but they’re luxuries many people with ME don’t have the energy for. When I was first ill I couldn’t do anything the same day that I had to wash my hair. I had to spend the rest of the day recovering. I was fortunate enough that I was still well enough to use a shower though, as many people have to try to wash their hair in bed, or make do with dry shampoo. I had to use a bottle of 2-in-1 as I only had the energy to apply the shampoo/conditioner and wash it out once. I then had to let it dry naturally as I didn’t have the energy to blow-dry it.

When you’re cooped up at home, unable to leave the house, then it becomes difficult to meet people, whether you’re looking to make new friends or meet that special someone. As part of volunteering for an ME charity I used to go and visit a young girl with ME and her mum regularly. They were both lovely, but in a way it was quite depressing because I was one of the few people who she saw. I was one of only two friends who she had over to the house. She was only about 10 when I first started going to see her and I was in my early 20s. I think she enjoyed my visits, but it just seemed so sad that someone so young had to rely on someone around twice her age for so much of her social life. We could talk or watch TV as long as she could lie on the sofa or bed, but that was it. She couldn’t play with friends her own age. It must be so difficult for children who can’t play games anymore.

Disbelief is a huge problem for ME sufferers. Not just from doctors who don’t keep up with the latest NICE guidelines or schools who put education before their students’ health, but also from our nearest and dearest who are supposed to be the people who support us most. At ME meet ups it’s quite common for people to swap notes on all of the insensitive (and often outright rude) things that people have said. One of the biggest problems I’ve kept coming across as part of my volunteering is how isolated people become. Out of sight is out of mind, and once people drop out of school and become house or bed-bound it takes surprisingly little time for their friends to forget about them. You have to work quite hard to keep in touch with your friends if you’re not seeing them every day. When I was at my worst I was only able to type one text a day. That’s it. That was my social life. When I was finally a bit better I progressed onto being able to email people. One day I got an email from a friend saying that she’d just read my email, but now that she was replying she couldn’t remember what it said and couldn’t be bothered to go back and read it. You can imagine how that made me feel – I’d spent my energy for a whole morning on that one email and I needn’t have bothered. I was at school when I became ill and I didn’t want to be labelled as an attention seeker (I already knew that people had been calling me a skiver and that was bad enough), so I never talked about my ME unless my friends asked me about it first. With hindsight I realise that that was a mistake. It isn’t really considered polite to ask people about their illness so I think my friends at the time didn’t realise that it was ok for them to talk to me about it if they wanted to. Now that I’m more open about my ME, my current friends are a lot more understanding about what I can and can’t do.

Thanks once again to Kat for writing this, you can read her previous bogpost here.

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