Wednesday 24 May 2023

 

Angus sat 2nd part of his GCSE exam 23rd May 2023. He is 18 and has only managed to do 2 others, this will be his 3rd. His tutor has always said that he is bright enough to go to uni and have good grades in A level to support this.  How must it feel to him to be doing easier work than his ability show he is capable of.

The frustration of not being able to recharge his body for proper quality learning, with a good basis of revision, grows ever stronger as his energy seeps through his brain like sand through a time piece. His fear is that if this happens in an exam, that loss of time as his brain crashes will be such a waste of his health. The sacrifice he has made is immense.  There was once a system where these problems were understood and instead of exam work you could put in your work through the year. There is no such level playing field in education for disabled young people now. We seem to have gone backwards in our understanding of need.

He has had no medical support, no recognition for his deep PEM and how that is a danger to his health or looking for the treatments known to alleviate symptoms to safeguard his health. The funding for care is not provided by the government to GPs, so why should doctors find the funds for his care out of their pocket?

This government are only prepared to promote ME as mental health condition. They have funded psychological research and treatments only. I wonder how that impacts on Angus’s view on society. Will this ever change with any party?

For me the fear of having nowhere to turn when his physical health declines, as he pushes to do work is frightening. It is intensified with knowing his physical disease is denied, so when medical attention is needed, he is only looked at as an anxiety driven recluse of his own choosing. I shudder as I know how that impacts on him as a person. Discrimination in medical history is there for all to see.

The extra mental energy he has been using; little as it is, has activated all of the disregulations ME sufferers know only too well. It’s not just the increase in pain that impacts him, it is the fact he no longer can think coherently, and the world turns on him because of his disease.

We have no way of knowing how long this increase in severity will last or if he will ever recover to his former abilities. It is understood by millions of those that have ME and now Long Covid but is not recognised in the GP surgeries around the UK or the CFS clinics. How does that happen in 2023 when we have known since the 1800s what this disease is. The idea that we are progressive in medicine is so wrong and that Mental Health is understood is a misnomer, because if they determine ME is mental health issue, they have no understanding at all.

My thoughts are with everyone who are in the process of taking exams, be kind to yourself and you have big marshmallow hugs from me.

To those with ME, PEM and Long Covid you are true heroes and the results do not show your real talent, but I for one recognise your ability to shine through adversity and I am in awe of you all.

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