Today I am going to talk about ME/CFS, which stands for Myalgic encephalomyelitis, also known as Chronic Fatigue Syndrome.
It is an illness I have had for four years and I want to give my personal perspective on it to increase awareness. ME/CFS is a chronic neurological illness that is often misunderstood, even though it affects millions of lives worldwide.
Around a quarter of a million people in the UK alone have the diagnosis but no treatment. It affects an estimated 2-3% of children and is the commonest reason for long -term health-related absence from school.
Many young people miss years of education, though they are desperate to learn. I am one of those people. Every day, as my classmates trudge off to maths, I learn lessons that are equally important; lessons to help me navigate the days, even if I won’t receive a certificate at the end.
The first lesson I have learnt is to listen to my body. It throws out a random jumble of symptoms and if I ignore them, things will escalate. The term chronic fatigue syndrome is misleading. “I get tired too”, is what people say.
But it’s not just tiredness. It’s a jailer chaining your limbs to the floor when you’ve committed no crime. It’s an exhaustion that means smiling can be too much effort, so people keep asking if I’m feeling down.
It’s all consuming. Then there’s pain. Joint pain, leg pain, muscle pain, a pounding, drumming war chant in my head. It can start like a flickering candle flame, seemingly harmless, but a warning of the fire that will soon rage through my body and bring with it a nausea that I desperately wish will leave me alone.
But the worst symptom is a cognitive haze. It’s a fog that infiltrates my mind, that taints every conversation with confusion, entangling words in my head. The world comes at me through an opaque lens.
I start to speak but the words disappear, thoughts suspended momentarily in the air and floating away as I mentally try to grasp them back. People’s voices fade into the distance, their lips moving as I nod and smile to pretend I’m listening to words I can’t understand. Over time I get used to picking up signs. My body is an instrument and I must learn its melody in the hope I can tune it to work again.
Lesson two is to appreciate friendship. Being stuck in a continuous lock-down, the social buzz is far from lively. The only buzz I get is from a timer. About four times a year, my friend will rush up the stairs and will jabber as fast as possible, trying to squeeze months of news into 20 minutes. When the timer buzzes, a flash of disappointment will pass across her face, but she’ll bound up and hug me, knowing staying longer would hurt me more than her leaving.
These visits are precious but energy-guzzling, so I’ve become accustomed to listening to a disembodied voice on the end of a phone or squinting at a grainy figure on a Skype call. Many people with ME/CFS suffer with social isolation and I’m extremely lucky to have my friends who try to understand my illness and support me.
Another lesson, possibly the hardest I’ve had to learn, is to have patience. Surveys show the average person becomes frustrated after waiting 16 seconds for a web page to load. Four years ago, I was diagnosed with ME/CFS: I’ve been waiting 12, 614, 400 seconds for my life to return to normal. Every day is a cloud of unpredictability, so if my body responds, I sigh in relief that it’s a good day, but it’s always tainted with the thought of what will happen tomorrow.
Things change rapidly. One moment I’m laughing at a joke, the next the joke’s on me as I struggle up the stairs. If I feel frustrated that my body cries out for rest yet deprives me of sleep, the frustration will only deplete my energy.
If I feel resentment that my body demands respect without earning it, I’ll be exhausted even more. When relapses happen and rubble rings all around, patience is my only friend.
The final lesson I’ve learnt is to smile when I can. If I only have a certain amount of energy per day, spending it on smiling is an easy choice. And people stare at me in my wheelchair. I don’t let it upset me, but smile back at them instead. Sometimes I smile too much. If I do, the doctors think I may be too optimistic and reel me back in. “Yes, things are improving”, they say, “At the moment, but remember you can relapse”. Then, if I stop smiling, they worry. “You will get better”, they say, though they stop tagging ‘soon’ on the end.
So I’ve learnt to remain hopeful, but not too hopeful. These lessons aren’t always easy. but they’re things that this illness has taught me. I won’t lie, I’d prefer a normal school education, but the choice isn’t there right now.
Even so, I’m lucky. I appear briefly on good days with a smile and attempt to act normal. Others with ME/CFS are permanently confined to their rooms at home with little support, unable to access any schooling.
I’m hoping that this insight into this illness will help more people understand a little about it, and that one day soon there’ll be a breakthrough in research that allows all these hidden children to re -emerge.
Thank you for listening. I hope you have a good day. Bye.
