I have a little friend and they go by the name of M.E, or as you may want to medically classify it, Myalgic Encephalomyelitis. In short, many people know the disorder as Chronic Fatigue Syndrome.
I remember upon reading the latter term in my first ever awareness post two years ago, I did have readers click off my page because I was ‘just tired’, as I’d already had people walk out of my life. I wrote this post at a time my M.E. was severe, and I spent the best part of a year bedbound, and I would say that shows, giving it a read back; though internet presence is not directly related to wellness (or a lack of), at the time I was still new to chronic illnesses on a more severe level, meaning I was thrown in the deep end, evident by the lack of coherence in the post. Goodness, I am sorry about that, but it was out of my control. Anyway, back to my point…
I’ve had my fair share of ‘you’re just tired’, or ‘lazy’, or ‘it’s all in your head’ over the years. I struggled a lot in my last year of sixth form, and the condition made me bed-bound for the best part of a year. This was tough not only for the obvious, physical reasons, but also because I still did push myself, and it didn’t pay off; it just landed me in the midst of more teasing.
“How come you couldn’t come to (blank) but you can turn up to (blank) now?”
That was a frequent one. The interesting thing is, some teachers did in fact understand, but it was the clever-arse able-bodied students who thought they knew better. They didn’t understand the spoon theory, nor how chronic illness fluctuates, and as a result, the way one living with a chronic illness does live. Some people were just ignorant (though it still does not excuse the ableism), but others knew and didn’t want to listen.
Fast forward two years and i’m here. I currently go to college and work part time. Throughout the year, it’s been tough. I’ve not had full attendance due to my health (a multitude of reasons) and struggles with fatigue, and chronic pain. I cannot expect full attendance due to this alone, without considering the rest of my battles as a disabled person. It’s a tough one. Luckily, being on an access course they have to be understanding. I have the most lovely lecturers, too, and their support really has helped me on my path towards university, where i’ll hopefully be heading soon.
I truly wish I wasn’t fatigued all the time, but since I’ve not had that luxury for years, I can’t even put my finger on what it feels like.
Maybe I’m not the person I used to be. Maybe I can’t just do things and not consider how it will impact me long term. But M.E. is a part of me, and that’s something I have to live with. Some days it’s hard to accept, especially seeing friends out for a coffee together, when you know you can’t even grab one from your kitchen. Some days the diagnosis* is liberating because you’re aware that it validates your low battery. But every day is a battle.
There are people out there who still don’t believe in the condition, and that’s extremely hurtful to the spoonie community- especially when some of these people are doctors.
I wanted to add a little something extra upon talking about the liberation of a diagnosis. I am very lucky to have the diagnosis, but the vast majority of people who do, don’t formally, and it can take years.
There are no official statistics referring to diagnosis time, but upon talking to people first hand, it seems unlikely to be diagnosed in the first few years, and someone quoted theirs to take almost two decades. Someone very close to me has been struggling with getting a diagnosis for a quarter of their life, but everyone knows they have the condition, and that has been clear for years… before I even knew them!
Diagnosis does not equal validity. Your CFS is valid even if you haven’t had the privilege of formal diagnosis.
Yes, I am exhausted all the time. I am in pain all the time. Depressingly, i’m used to it. Some days I can’t get out of bed, and others I can work for 7 hours. But, yes, I have ME all the time… and it’s exhausting.
If you take nothing else from this awareness day, I beg you to please never insult someone with ME with phrases like ‘everybody gets tired’ / ‘i’m tired too’, or questioning why they can’t do something, or even don’t want to for spoons’ sake.
Stay aware lads, and look out for my next post on Fibromyalgia (in the next few days), fibro shares the awareness day as ME.
May 12th was ME/CFS awareness day.