Chronic Fatigue Syndrome and me.
“ME, is that the one where you can’t be arsed to do owt?”
“Oh I think I have that, I get tired too”
“Can’t be bothered disease”
“Can we really believe these people?”
“They’ve got lazy fuckeritis”
I started to write this post over a month ago, but it has been harder than I thought. So here I am, returning six weeks later to try and finish my story.
I finally got it. On 6 January, I was given the diagnosis I’ve been trying to get for the last eighteen months. After a year and a half of illness, not to mention being confined to my bed for a month in November and December, I finally persuaded a doctor to give me a private referral.
As my gut had told me all along, it wasn’t just stress causing my episodes, which I now know are called crashes. No, I shouldn’t just get on with it and wait for my body to snap out of it. No, I haven’t been acting like a drama queen for the last eighteen months.
No. I have Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis [ME] as it is also known.
I’ve confided a few people over the last six weeks and some of the responses have been ridiculous. I’ve been told by some that they’d rather end their life than have CFS. I’ve been told it’s not a real illness. I’ve been ignored, minimised and gaslit about my symptoms and feelings.
[Note: None of these are a good way to respond. If you’re not sure what to say, why not try asking “what would you like me to say?”]
Last week I completed a form which asked if I consider myself to have a disability which includes chronic illness lasting twelve months or longer. For the first time in my life I circled yes. I can’t tell you what a mind-fuck that was. I’m still getting to grips with it a week later, but one thing I do know is that I need support in all areas of life, and there’s no shame in asking for that.
I wrote last year that I’d be thankful to have a name for the pain and exhaustion I’d been feeling for the last year and a half. I’m grateful that to have my diagnosis, but I’m also very aware of the privilege involved in being able to access private healthcare, and even navigate the NHS successfully. There are so many others still waiting with undiagnosed chronic pain and illnesses.
I’m finding ways to get along with my CFS, but I’m not there yet. I also haven’t found my people yet. I hoped to find communities of people like me, with plenty in common, and I hope I’ll find them soon. I’ve also yet to find guidance anywhere that resonates with me. This feels like a life’s work project. For now, I just don’t have the energy. I’m scribbling ideas when I can though, and I’d love to create something on this theme soon.
For now though I need to get the basics done. It’s nearly 6pm and I haven’t had dinner yet. I need to be in bed by 9.30pm latest if I’m going to stand a chance of feeling refreshed in the morning. Who knew basic upkeep could be so exhausting.
By the way, the words in bold throughout this post? All actual words that I’ve heard IRL, online or via the media. Shit, isn’t it?
