‘I feel like I’m being crushed’: What it’s like living with chronic fatigue

People don’t understand invisible disabilities

It’s easy enough to assume you know what someone is going through, right? We all do it. The people on your course who never turn up to lectures? Can’t be bothered so they must be lazy, or maybe they think they’re too good at the subject to bother coming, so they’re cocky, yeah? Well, maybe not.

I can’t say my attendance to lectures is 100 per cent, but I try to keep it as high as possible. I don’t come because I can’t get out of bed. Lazy, right? Sure, I like a lie-in as much as the next person, but how about experiencing pain that makes it difficult to move? Getting out of bed can be a challenge so making it to a lecture on a day like that is near enough impossible.

I have a condition called chronic fatigue syndrome (CFS)/Myalgic Encephalomyelitis (ME). It’s a neurological disorder that affects the nervous system: The part of your brain that deals with your flight/fright and rest/digest responses works in overdrive.

A report published in 2017 estimated that up to 1 in 250 people in the UK suffer with CFS/ME. So, chances are you have crossed paths with someone dealing with it whether you were aware of it or not.

Your body is in a constant state of stress

Normally your nervous system is in equilibrium, but when you have ME your flight/fright response is working all the time. This results in there being a continuous rush of adrenaline and as such your body is in a constant state of stress – high heart rate, nausea, dizziness, problems thinking and concentrating.

These symptoms in turn result in sleep problems, so muscles become very fatigued as they have had little/no rest. Normal events that would be considered not stressful or even a little stressful for someone then become something that is very stressful for someone with ME as their body is already physically worked up.

ME affects people in different ways, but most generally is seen in a “boom/bust” cycle: A period of time with minimal symptoms (the boom), followed by a period of time where symptoms are particularly bad (the bust). There is no cure for ME but there are ways that the boom/bust cycle can be minimised.

Living with ME at university

I’ve always dreamed of coming to university, so I was very excited for first year to come around. But it wasn’t the easiest. Heartbreak, friends having meltdowns and flatmates moving out just about sums up the first couple of months of my university experience. With all the changes happening I put my tiredness and lack of motivation down to that.

But as the tiredness, pain and cognitive issues got worse I knew something wasn’t right. I got diagnosed in March 2018, which in a sense was a relief, but also I had no idea how to handle it. I wasn’t fully aware of the implications it would have or the frustrations that I was yet to experience. Since the diagnosis, it has become clear to me that whilst people know terms such as “chronic fatigue”, they don’t know the impact having an invisible disability can have.

Society has formed ideas of what “disability” is, and anything that can’t be seen is often not understood as well as ones that can be seen.

Invisible disabilities are isolating

I wake up on some days feeling like my mattress is on top of me. Like something is crushing me. It’s certainly not a nice feeling but I wouldn’t say that’s the toughest thing I have to face: It’s the people. People can’t always physically see what is going on, which means there is a distinct lack of understanding of it.

It makes it quite isolating since I feel like I’m constantly having to explain myself and sometimes it’s easier to just not try. The less I talk about it, the more the people around me believe everything is ok – so it’s a spiral. The ME hasn’t magically gone away just because it’s not spoken about.

It would be quite easy for me to get annoyed that the people around me don’t understand. Honestly, sometimes I want to scream. But that’s a waste of energy (which, let’s be real, is in very short supply for me). And it got me thinking – it’s not anyone else’s fault that they don’t know. It’s just based on a lack of education on the subject.

My symptoms can be managed

The degree to which people have ME varies massively and I’m not here trying to make out like I’ve got it the worst. I know I don’t. And in a sense, I consider myself lucky that I don’t have severe ME and I am learning how to manage it.

Changes to my diet, sleeping pattern and daytime routine, although these are small changes, have had a positive impact on my life.

I take 5 or 10 minutes out of my day in the morning and afternoon to “check-in” on myself. How am I feeling? Do I need to rest? Will carrying on negatively impact tomorrow? It may seem odd to actually set aside time for this but when you struggle to concentrate on things in front of you, concentrating on how you’re feeling whilst doing that just doesn’t happen.

Invisible disabilities need to be as well recognised as non-invisible ones. It’s no longer a case of “out of sight, out of mind”. Just because it can’t be seen, it doesn’t make it any less important.

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