I sat today listening to the debate on Myalgic Encephalomyelitis (ME) in the UK House of Commons and realised how widespread this struggle is. I also realised that I have been lucky in my interactions with my GPS and consultants. I have never had to convince my doctors that I am ill. It’s always the other way around. I didn’t have to fight for a diagnosis or treatment. It has been mostly plain sailing since I have been diagnosed with ME. I sometimes wonder if having Systematic Lupus (SLE) prior paved the way for a relatively fast diagnosis or not.
Therefore after hearing the many stories of people who were not believed and whose lives were made unbearable due to this fact, I am left flabbergasted . It was the accounts of children suffering with ME that left me feeling angry. The many children and young people who have had to struggle through their school years because they were not believed by their doctors and education authorities is simple an atrocity.
I know how much this disease has taken from me and can’t imagine what it must be like for a child who look around them and see their peers living active lives while they can’t. I developed ME in my late 30s and have often comforted myself with the fact that though I have lost my mobility and strength now I have had the chance to live a great life. I have enjoyed a myriad of great experiences, made great friends and visited beautiful places before all this entered my life. Even then, some days there is absolutely no comfort in that. How then more difficult it will be for a child when not being believed is also included in the many things you have to fight daily.
I don’t know how I would find the strength to fight the pain I experience daily if I also had to be also fighting to be believed. Keeping my self going takes every ounce of my reserves every day. It’s not a fight that takes time off. It fills your waking moments and your sleeping ones too.
If you are not trying to cope with the constant chronic pain, you are fighting an overwhelming exhaustion that takes away even you ability to think. There is no space in your day to try to convince anyone that you are ill, when you are busy convincing your body not to give up.
I consider myself an articulate person of sorts. In a past life I was an English teacher. Yet even I am sometimes unable to effectively communicate the havoc ME creates in my body and life. I sat today imagining how frustrating it must be for these young people to have to try to explain how ill they are in a hostile environment. I can only imagine how worried and helpless their parents and families must feel.
Society has to do better by our kids. Stop painting them as shirkers and hypochondriacs. Schools have to be more accommodating because we know they can. Doctors have to ensure they are trained in spotting and diagnosing ailing children. More has to be done and we have to join our small, sometimes feeble voices to create a cry of support for our mini Superheroes. They and their parents shouldn’t have to add acceptance to the fight that M.E. brings to your life.
Fecking ME 