Warning: this post is not about knitting. It is full of angry, tired and important stuff. While you’re free to skip this in favour of the next time I manage to summon up some sock-based humour or whatever, I would really appreciate you taking the time to read this. It is something that needs saying, and this is the best platform I’ve got.
Those of you who know me in real life will probably be aware that I have Chronic Fatigue Syndrome, the illness formerly known as ME (although this varies based on your doctor, and I’ve never made the switch). If you’ve never heard of it, this pretty much sums it up. It has been, and continues to be, dismissed as “not a real illness”, despite now being officially recognised as such. You may also have heard it disparaged as “yuppie flu”. Only one person has ever dared to use that term to my face, and those present say they’re still not sure how he’s still alive.
Long story short, ME is vert real, and has had a very negative impact on my life in pretty much every way you would expect. I have been trying to claw my way back to having a vaguely normal life since I first became ill three years ago.
Over the last few months, I have found that more and more people are telling me something along the lines of, “Oh, I think I’ve got a touch of that ME”.
No. No, you do not.
While I’m aware that none of these people mean harm, the fact remains that it’s incredibly unhelpful and needs to stop.
Let me explain. First of all, ME does vary in severity, but it is a real disease, one that has diagnostic criteria and specialist doctors. Imagine claiming that you had “a touch of diabetes” because you were feeling a bit peaky. Now imagine the spectacular lack of awareness required to say that to someone actually living with the condition. That is what you sound like.
I can see how it happens though. Many people use “tired all the time” to describe what it’s like to have ME. It’s pretty relatable. We all get overtired sometimes, even utterly burnt out and exhausted. You could almost say that modern life encourages it.
But “tired all the time” doesn’t even begin to do ME justice. Nearly all the fellow sufferers I know make a distinction between “normal tired” and “ME tired”. It’s a deep in the bones tired, the kind of exhaustion that comes with the knowledge that when you stop moving, you’re going to turn into a zombie for a week, minimum, and no amount of rest or sleep will help. It’s needing to lie down from the exertion of changing the bedsheets, and knowing that, if anything, you’re going to wake up more tired than you went to bed.
As previously mentioned, ME is a recognised medical condition, but that doesn’t mean that getting the label applied to you is a straightforward procedure. Because so little is known about it, it’s a diagnosis of elimination. The doctors have to rule out everything else that vaguely matches your symptoms. For about a year, I underwent a series of increasingly convoluted blood tests and scans. At one point, a hospital phlebotomist was reduced to tears by a request for 16 vials of blood out of my dodgy veins. Now, this process only took a year for me because my family intervened and sent me to a private consultant to speed things along (there’s a family history of ME, so we had suspicions from fairly early on). I imagine it takes most people rather longer, given the current state of the NHS. Even with my relatively speedy passage through the system, I have cried at test results that told me I didn’t have a brain tumour, because it could have been fixed with surgery. On the other hand, ME has little in the way of reliable treatments, and nothing that even resembles a cure.
[NOTE: the first person to send me a culty email about the benefit of the Lightening Process or similar will be fired into the centre of the sun]
It’s one hell of a process, especially given that some doctors still won’t take it seriously, despite recognition from the CDC, NHS, NICE, WHO and plenty more. So when you claim to have it, apropos of feeling a bit tired, you undermine not only the reality of living with the condition, but ongoing attempts to get it more widely accepted, and maybe persuading people to fund some research into what the hell causes it, and possibly even some better treatment.
The other problem with describing ME as “tired all the time” is that it’s only part of the picture. Yes, fatigue is the main symptom (if the pain is primary, then the diagnosis is more likely to be fibromyalgia), but ME causes many other problems. For instance, pain (especially in joints and throat). This has improved for me, but at one point I was unable to stand because it felt like my bones were crumbling under my own weight. When I was still dragging myself to an office job, I would cling to the walls on my way in because of the dizziness, praying my colleagues wouldn’t think I was drunk. Digestive problems are also common, along with mental health problems, because – surprise! – being too ill to get on with your life can make you fucking miserable.
Add in flu-like symptoms, palpitations, nausea and an inability to cope with temperature changes, and you’re starting to get the idea. For me, the biggest non-fatigue problem have been the cognitive issues collectively known as brain fog. I have difficulty concentrating, my short to medium term memory is screwed, and I frequently have trouble finding words (notable example: I once took ten minutes to remember the word “wheelbarrow”). You should be able to infer what this did to my copywriting career, where speed is of the essence. “Tired all the time” is convenient shorthand, but doesn’t even begin to cover what living with ME is like.
And bear in mind, my symptoms are classified as “moderate” (or mild on a good day). This disease puts people in wheelchairs, leaves people housebound, and makes some resort to feeding tubes because they don’t even have the energy to swallow. You do not have “a touch of ME”, and I sincerely hope you never do. Please find a less infuriating way of saying you’re tired.