Yesterday, I attended a local International Women’s Day/Young Women’s Day event. I was taking part in speed meetings which gave girls aged 11-19 a chance to talk to ‘inspirational women’. I took Foggy along to show how I raise awareness of Myalgic Encephalomyelitis (M.E) and I think having a soft toy there helped them to relax a bit. Surprisingly, I found it incredibly difficult to explain what M.E is to young people who have no knowledge of the illness. I became very aware of just how many very long words we, the M.E community, use to describe our illness. One of the youth workers helped me out by saying it is also known as Chronic Fatigue Syndrome, which I guess would be slightly more understandable, but I HATE using that name and didn’t want to use it! .
I really didn’t do a good job in terms of describing what M.E is. This is a worry for me as the new social enterprise will include training for teachers and a fun info section for children. Teachers can refer classes to this info to learn about the illness. I need to come up with very basic language to accurately describe our complex neurological condition.
In my defence, I have very little contact with any human beings under the age of 16. I find it very difficult to ‘dumb’ down what I need to say. I usually resort to ‘have you ever felt really poorly and don’t want to get out of bed or move around? That’s how I feel every day’, that kind of thing. Hardly an accurate description! It’s not as if I can point to a skin rash, plaster, swollen limb! It’s an invisible disability. It is going to be difficult to get a child to understand that. I’m sure M.E peeps who are parents do an element of storytelling when they are describing their M.E experience to their children. For example, ‘Remember when Mummy couldn’t get the washing out of the washing machine? I felt really tired and my arms were hurting’. That kind of thing, please let me know if I am way off the mark. Talking about M.E to children has never been on my radar and it’s something I have got to learn.
21,000 children and young adults have M.E in the UK. Teachers and their students need to know about, and understand the illness. How can we expect schools to know how to support their students if they have no idea how M.E affects sufferers? We all know that the official info schools have access to is not fit for purpose. Anyone taken a look at NHS Choices recently? Perhaps they have a GP contact? If healthcare professionals don’t have training either it doesn’t bode well! Yes, there are specific M.E children’s charities such as the Tymes Trust but would schools know to contact them? I’m going to reach out to UK schools and deliver the info before the need to offer additional support arises. I have been contacted by Headmistresses in the past who are desperate for info because they have just found out that 5 students in their final school year have been diagnosed, and they have no idea what additional support should be offered. I’m a strong believer in ‘forewarned is forearmed’. Headmistresses, teachers, and teaching assistants will be able to instantly support a student without delay after receiving my training. I raise awareness of M.E from a human perspective so that it is easy to relate to, hopefully that will help the training to be as effective as possible.
I had un-diagnosed M.E in my teenage years and I was very lucky that my school had a policy of sending classroom notes/homework home if a student had a high level of sickness absence, whatever the illness or whether the student had received a diagnosis. I have asked my parents and they don’t remember if they had any input in that decision. That was over 25 years ago and I doubt very much that M.E or the dreaded name Chronic Fatigue Syndrome would have been on their radar. I was able to complete the work at my own pace. I came away with 9 GCSEs above grade C so it was a policy that worked for me personally
If you are a parent of an M.E sufferer (16 yrs and under), could you ask them how they explain their illness to their friends? I need to know what language they use themselves. Rather than how an adult explains an illness to a child. I need to get my approach spot on. I hope you can help me with that. Please contact me via the contact button on MEFoggyDog.org.
and Foggy (OBVIOUSLY)