A blog post about my experience of living with Myalgic Encephalomyelitis

Back in early 2021, in the middle of the pandemic, I was given my diagnosis. It was unrelated to Covid – I’d already been ill for the five or six years previous to that. My problems began in 2014 when I found out that I had an underactive thyroid. Hence the delay in diagnosis – further thyroid problems had to be ruled out. And given my age, menopause had to be considered too.

Finally, in late 2020 I visited a rheumatologist who confirmed what i already suspected – ME/CFS. ME is a chronic multi-system disease which makes just about everything go wrong. It can affect children and young people as well as older people. It’s nasty. And there’s currently no cure.

There are a few things that make ME different from regular exhaustion. The most important and frankly the worst one is the bizarrely named Post Exertional Malaise (or PEM to those unfortunate enough to know it well). This is the after-effect of any kind of activity and is the thing that makes ME different from other conditions.

The worst PEM I’ve had to date was after a particularly stressful period in my life. Again, early 2021. I had just been diagnosed and I had also been going through an intensive screening process to try and foster my nephews. We found out we were unable to foster them and then the day after, the PEM hit me like a wave. I was in pain everywhere and had no energy – it was like I had flu.

PEM is unpleasant – it can (and often does) feel like you’re dying. I become breathless and fluey and sometimes my temperature goes up. But hands down the worst thing about it, is that every time it happens, it means you’ve made your condition worse.

When you’re initiated into this club that nobody wants to join, you find out that there are many, many people who are much worse than you. People whose bodies are so far gone that they literally cannot move from their bed, can’t tolerate light or sound, can’t eat. And that at one point, they were like you. Cautionary tales abound in the ME world – people who wish they had taken the illness seriously when their symptoms were mild.

So that leaves you in the very weird situation of being physically capable of doing a lot more than you should – with no clear indicator of where that line is. That leads to a constant cycle of spells of imposter syndrome followed by guilt that you’re not taking the condition seriously enough. Am I sacrificing my future by doing too much in the present? Am I signing my husband up to years of being my carer because I haven’t learned to manage my condition by resting?

It comes with all sorts of other illnesses too.  It’s damaged my heart. I have to be on beta-blockers because my heart beats too quickly (a very common situation for ME sufferers). I have constant pain all over my body and have started walking with a stick. I’m likely to need a wheelchair in a few years and I’ll almost certainly have to leave work once I’m no longer mild-moderate but in the moderate category.

And then there’s the other side of things. Other people.

In the eighties, ME was called yuppie flu – a thing you got when you just couldn’t be bothered to work. The fact that they’ve now found an indisputable physical basis for ME (thank you Decode ME project) doesn’t deter people from thinking you’re lazy or exaggerating. I’ve been assured that lazy people don’t get ME – because they know how to rest. ME sufferers are often the ones who overdid things. I’m no exception – when I first got ill I was training a lot as well as caring for my young family and working part time at a manual job. Then I got ill, and gradually found myself unable to do the things I’d always done.

One of the problems with ME is that in the mild- moderate stages you don’t particularly look ill. You have this odd relationship with adrenaline which means if you’re out and about and your body is awash with adrenaline, you feel better than normal. So you can socialise, run a meeting, teach a class and look perfectly normal. Then the adrenaline wears off and you’re ill, and shiverey and in pain. But nobody sees that, apart from your nearest and dearest.

It’s hardly surprising that some people will assume you’re faking it or exaggerating your symptoms. You get used to not being believed. You get used to being given terrible advice, even by health professionals. It’s frustrating though – and every now and then it does get to you when somebody infers you’re lazy or depressed or just not trying hard enough. I remember trying to explain my situation to a friend and being told to be more positive. I am positive. It’s how i cope. But the reality of ME is shit and no amount of forced positivity will change that.

So here’s the thing. If you know somebody with chronic illness and you find yourself thinking well, she looked fine yesterday… just pause that thought. Instead, consider that maybe there’s a whole side of things you’re not seeing. That maybe they’re already dealing with a lot, and what they need is support, not ill judged and unnecessary comments.