Confessions of a Chronic Fatigue Skeptic

“Chronic fatigue, my arse!”

I have a confession to make. I have oftentimes throughout my life internally judged people for being overly dramatic. There, I’ve said it. I am a closet censure. I am guilty of internal eye rolls, doubtful compassion and quite frankly some completely uneducated thought processes. And now, with the tables turned, I feel foolish, guilty and judged!

Let me explain.

You know when a colleague calls in sick for work, they have that gruff voice and tell you they’re all flued-up and can’t possibly make it in today but they’ll try for tomorrow? You sympathetically tell them to get some rest and look after themselves and just let you know about their next shift. Well, that’s me, nodding on the phone to show I understand, even though they can’t see me, but inside, well that’s a different story because inside I’m telling myself, “It’s not the flu, it’s just a damn cold, have some Beecham’s and get your ass to work – I had a cold last week but you didn’t see me calling in sick!”

The problem is, we don’t always understand how other people are feeling. To be honest, I’m not sure we even try that hard to. Another problem is that we don’t know how many other issues are contributing to the issues at hand to make it either more than it is or to make it effects more than they would normally be. We can’t possibly comprehend what some people go through day-in, day-out.

When I was first diagnosed with one of my illnesses, it was something I’d never heard of, so I did what anyone else would do and spent some time with our trusted friend, Google. I got a bit of information, found a few treatments and even some cures of dubious origins but I quickly realized I need a personal perspective. I needed to know the ins and outs, ups and downs and the nitty-gritty of this foreign condition and the impact it was going to have.
Enter Facebook stage left.

So now here I am joining support groups, reading comments, discovering a whole new vocabulary and feeling an overwhelming sense of depression and if I’m honest, denial. I scoured through posts, walls, pictures and a lot of people needing acceptance and reassurance. This wasn’t me. This level of honesty (what I saw as negativity) wasn’t what I needed. This level of reliance wasn’t helpful. This level of illness wasn’t where I was headed. I was in the wrong place! Maybe I was misdiagnosed, maybe my illness wasn’t as severe as theirs, maybe I should eat more kale and we can forget that this ever happened!

I decided I wasn’t going to pay too much attention to these groups, as they obviously weren’t relevant to my situation. I’d scroll past, picking up occasional words and repeated themes. One such phrase kept popping up: “chronic fatigue.” Apparently, long-term tiredness was a thing. I saw posts about people not working due to chronic fatigue, people not getting out of bed due to chronic fatigue, people not even showering due to chronic fatigue. I was in disbelief. I mean, how can you be too tired to shower? I wouldn’t personally go a day without showering at least once. How can you not get out of bed? I just couldn’t comprehend it. Simple, everyday tasks were being abandoned because of tiredness. At the time I was working 60 hour weeks, I was tired. My sister has four kids, she was tired. My mum was 60 years old working fulltime in a hospital, she was tired. Everybody is tired! Life is hard, exhausting even, but I just couldn’t fathom such fatigue or its impact.

Until now…

Fast forward six years. If I’m not at work, I’m in bed. If I need to have a shower, make a drink, go out… I need to store the energy up first to be able to perform the task, and when it’s done – so am I. My social life was abandoned in favor of afternoon naps, my long shifts left me needing a day off to recuperate, my diet and exercise was sold out for my mental sanity. I’m exhausted and not the exhausted that can be recovered from but a permanent level of no energy hollow-ness that’s impossible to fill. No amount of rest can restore it, no amount of medication can relieve it and no amount of kale and positive thinking can heal it.

I had become what I’d always considered a myth, and when people ask me why I look so tired, why I’m so pale, why I don’t want to go out, I cannot find it inside myself to utter the words. I cannot voice that which I so easily doubted. I cannot explain in any comprehensible way the fact that my body is permanently out of fuel and there aren’t enough spoons in the world to fix me.

And aside from the fact that I can’t explain it, I don’t want to. I don’t want the judgments, I don’t want the doubtful looks, the patronizing advice, I don’t want to try and make you understand something you can not possibly imagine without living through it. But mostly, mostly I don’t want to see the look on a person’s face as they internalize their true thoughts,
“Uncontrollable tiredness? She’s just fucking lazy! Chronic fatigue, my arse!”