What’s Wrong With You, Dude?
Anyone who has known me or followed me for a while will probably have heard me mention my health difficulties. I have a disability, but you probably won’t have heard me call it that. I’ll have talked about my “medical shenanigans”, or my “chronic illness”, but never the D-word. The why of that is probably a whole psychological thesis unto itself, but for now lets just simplify it down to: I’m British, and I don’t want to make a fuss.
I have been very lucky, however, to have found people on the internet who do speak openly about their condition. Knowing what others are struggling with – that I’m not the only one – has been such an incredible help to me and my ability to cope. In the spirit of paying that forward, I figured I would open up and talk a little bit about what is wrong with me, and how I got here.
If I was filling in a form, I would write that I suffer from myalgic encephalomyelitis (ME), which is a fancy way of saying that I have chronic fatigue syndrome (CFS). Those are two of half a dozen different terms that I could use, because chronic fatigue syndrome is less of a specific thing, and more of a lost and found box that collects together people with some combination of a selection of symptoms that doctors can’t explain any other way. There’s no test for chronic fatigue syndrome, it’s a diagnosis that comes when you have ruled out all of the alternatives that you could be tested for. I like to think of it as a Sherlock Holmes illness: “once you eliminate the impossible, whatever remains, however improbable… is probably chronic fatigue syndrome.”
Despite this mystery, chronic fatigue syndrome is an absurdly common condition. Estimates have anywhere from a million to millions of cases in the UK and United States alone. Around 75% of sufferers are unable to work, and around 25% are house-bound or bedridden for a significant chunk of the time. Because there’s not a known cause, there isn’t really a treatment, either: just a regimen of dealing with the symptoms and trying to cope as best you can with the new normal. The condition can go away on it’s own (magic!), and sufferers can get on top of things well enough to return to some semblance of normal, but this a process that can take years, decades, or may never happen.
But what’s the big deal? You’re tired all the time. Me too. So what?
There’s a different name for chronic fatigue syndrome that I like a lot better: systemic exertion intolerance disease (SEID). I like it because it has cool words like systemic in there, but also because it sums up things for me quite well. It is not just that I am chronically fatigued, it’s that if I exert myself, all hell breaks loose. Another name is post-viral fatigue syndrome, which points you at the culprit: my immune system. To oversimplify things somewhat, the current best guess is that this condition begins when you were suffering from a virus, and it rudely forgot to switch off your immune system when it left. So your immune system is constantly rumbling away, burning through your energy reserves (the chronic fatigue), tossing out random cold/flu symptoms at random (fevers, congestion, all that good stuff – especially since at the time of writing we are in the midsts of the COVID pandemic!), and generally just being restless and antsy.
This is where that systemic exertion intolerance comes in: because as soon as you do anything, like go for a walk, buy groceries, get stressed out, or sit for too long with your ankle at a weird angle, your immune system leaps into action faster than a US military response under a Republican President, and then bam! Drone strikes, bombing runs, and utter chaos. Similar to things like fibromyalgia or an autoimmune disease, your immune system attacks a part of your body (usually tendons in my case) as if it’s a virus, and then gets to keep itself busy doing all the things an immune system does to address the injury that it caused.
So, is that what happened to me? Was there a viral that caused post-viral fatigue syndrome?
Well… we don’t know. One of the problems with chronic fatigue syndrome is that usually you aren’t diagnosed with it until you’ve spent a long time ruling everything else out, so it’s potentially years before anyone starts thinking about what might have caused a condition that no one realised you had at the time. I didn’t see a specialist and get this diagnosis until around 2012/2013, but we now suspect that it could have started all the way back in high school as an underlying condition that other diagnoses got in the way of.
Because yes, just to be awkward, I don’t just have chronic fatigue syndrome: I also have hyperuricemia, which is a fancy way of saying that I have gout without sounding like I’m Henry VIII. Long story short again, my body is less good than it should be at filtering uric acid out of my blood, and so sometimes it panics and shoves the excess into my joints, where it forms acid crystals and grinds on all the juicy bits in there like broken glass. In your foot it’s gout, but I get it in my knees, wrists, hands, fingers, shoulders, and all sorts. Which as you can imagine is exactly the sort of provocation that the US Immune Corps is eagerly waiting for.
Hyperuricemia wasn’t the only thing I was diagnosed with at the time. Like a lot of high schoolers – particularly those living through a divorce – I was diagnosed with depression, and medicated accordingly. Whether I was depressed or not (I probably was) is a moot point, however: what’s relevant is that a lot of the symptoms of depression and side-effects of antidepressants quite helpfully overlap with the symptoms of chronic fatigue syndrome. This, we suspect, was when everything started.
The problem then was that, every time I started to suffer from those same issues in the years since, my doctors (understandably) fell back on that same diagnosis. In hindsight, I now know that the pain I started experiencing in my feet in college was a tendon issue and not a gout issue, but at the time we had no reason to suspect that or medicate it differently. As I began to struggle with my energy levels and concentration at university – which I now recognise as the same fatigue and the same sensory overload struggles I have now – there was no reason to suspect that I wasn’t just suffering from depression, or to realise that failed relationships and failed exams might be the result of what was wrong with me rather than the cause.
It wasn’t until around 2011 that I started to suspect something else was going on. After a whole heap of ups and downs I had got myself into a great place: I job I loved (and still miss on a daily basis), a place of my own, my first niece, all that good stuff. I had the fatigue, but I was so damn happy with where I was at that I just shrugged it off as part of being an adult. Then my first proper bout of tendonitis happened – or rather, the first flare-up in my Achilles tendon, so it was conclusively not a joint/gout thing. Now, weird as it sounds, I was kinda into this: being a nerd called Jason, you either grow to love or to hate Greek mythology, and I’m definitely in the former category, so I was just jazzed about the whole Achilles thing. We treated it as a one-off thing, but it kept happening. Getting to work became trickier, but my employers were great, and I was that annoying overly-keen above and beyond guy in the office so I’d earned a lot of goodwill, so I was able to work from home on the days when I couldn’t walk, and I was rocking up to work with a cane feeling like House, MD on the better days.
But then the mental symptoms kicked in, which for me is the worst part. I was a read-a-book-in-one-day sort of guy. I was a write recreationally for fun kind of guy. I studied Quantum and Cosmological Physics. My brain used to be pretty good at braining. But I started to struggle with reading; I’d get to the bottom of the page, and I wouldn’t have absorbed any of what happened. I started to struggle with work, little errors and mistakes, stuff that my colleagues and my managers were incredibly understanding about, but that meant that I was slowly becoming less and less capable of doing this job that I loved. Eventually, my doctor decided that I should be written off work for three months. That was around my 24th birthday, and I have not been able to work since. And just for context – it just took this former physics student five minutes, a calculator, and a spreadsheet to figure out how old he was in 2011. I hate this symptom so much.
While I was written off work, I finally went through enough hoops, tests, and possible treatments that my doctor finally reached the “I don’t know what else it is, lets send you to a chronic fatigue specialist” stage. So in early 2012 I finally got a diagnosis, even if that diagnosis is basically the medical equivalent of a shrug and a question mark. But since there’s no cure, and no direct treatment, what do you even do with that? It wasn’t until I moved to my current address and current doctor about five years ago that I really made any sort of progress. Despite having been diagnosed with gout back in my teens, he was the first person to figure out that my hyperuricemia was a chronic thing – which he himself suffers from – rather than a diet/obesity thing. It was only a couple of years ago that I had my eyes re-tested (I’d worn reading glasses, but stopped wearing them when I stopped reading) to see if that would help, and only last year when I was referred for a series of hearing tests to figure out if my sensory overload problems where because of my condition, or an underlying hearing loss. It’s only in the last few months that the government has finally conceded I am “disabled enough” to use disabled parking or have assistance getting too and from hospital appointments.
So… what actually is wrong with me.
Well, yes, I am chronically fatigued. My day to day baseline is like I’m suffering from a bad case of the flu. My head is foggy, my body is achy, and I get tired doing basic tasks. Stand up for a few minutes to cook dinner, and I need to sit down. Carry the laundry up the stairs, and I’m out of breath. Stand up in a shower for a few minutes with water falling on my head, and I’m so dizzy and exhausted that I need to lie down and take a nap. That’s an average day. On top of that, I usually have some sort of tendon and/or joint thing happening. If I’m lucky, it’s one at a time; more often than that it’s a few. Right now, I seem to have slept funny, so my ankle is behaving as if I have sprained it, and probably will be for a few days. A few days ago, I had a fairly common one: inflamation in my knee (it lifts the kneecap out of place a tiny bit, so you can poke it and it sorta squishes around all gross and cool) that meant I needed crutches to get around the house. I will often have inflamation in my knuckles or my wrist or my elbow that takes one of my arms out of action, stopping me from being able to cook, or use a computer, or use my crutches – which is a problem if it overlaps with a leg issue, as it often does. These situations are made worse by exertion, and we’re not talking running marathons here: if I go to the grocery store, which I’ve had to do every two weeks (thanks, able-bodied people, for sniping all the home delivery grocery slots!) I am so exhausted by the stress and effort that I am utterly exhausted and stuck in bed for a couple of days, and often – like my knee a few days ago – it triggers one of those flare-ups as well.
I also get flare-ups if I am sick. A few years ago I visited my nieces in Bulgaria, and managed to catch a) the flu that had been going around at their school, and then as I was recovering b) a separate flu from the person who picked me up at the airport. That second flu strain triggered a flare-up in both my Achilles tendons at once; which sprained both my ankles; which triggered flare-ups in tendons elsewhere in my feet. After several weeks stuck in bed and unable to put weight on my feet at all, my leg muscles had attrophied so much that I could no longer stand or walk. I got sick in January/February, and I didn’t recover until about when Infinity War came out – so, what, about six months?
On top of all that are the mental components. By that I don’t mean mood and mindset and emotions – although that is a big part of it – but rather the physiological functioning of my brain stuff. I usually explain this to people as being like an outdated cellphone, with limited RAM. If you try to do too many things at once, everything slows down, and may even freeze; and the more apps you have open in the background, the more quickly you will drain the battery. I had some pretty serious/stressful financial issues at the tail end of last year, and the stress was not just draining my batteries but triggering my physical symptoms too. But it isn’t just big things, either: put me in a place with too much ambient noise, and and I cannot filter out the words that a person is saying. If I am walking, I am so concentrated on the act of walking that I cannot hear what people are saying to me. When I climb the stairs, I have to actively remind myself to breathe, because otherwise my body forgets to do that, and I find myself having held my breath the entire time without realising.
So, why write all of that? Yeah, my situation sucks, but I still have all my limbs, and it’s not going to kill me, and it could be worse, and all of those other things that the voice in the back of my head tells me on a daily basis. And yeah, absolutely. I am lucky that I don’t have a worse condition. I am lucky that I don’t have a worse case of this condition. I am lucky that I live in a country where I can get benefits that let me be housebound without it being a death sentence, and where my medication is provided to me rather than it being a financial burden. No one is more acutely aware of it than me, and this is not meant as a sob story, or fishing for sympathy. Hell, I’m British, if anyone looks at me for more than three seconds I become intensely uncomfortable at receiving so much undeserved attention.
If there’s any purpose to writing this, it’s for the sake of people like 2000s me, and who are potentially shrugging off the signs of what might be wrong with them, because it’s just the same old thing. It’s for the sake of people like 2010s me, who are seeing all of these pieces start to jigsaw together, but are feeling like their inability to soldier through and overcome it is a personal failing. It’s for the same of 2020 me as well: because yeah, Jace, there are people in the world who are worse off than you, but your situation still sucks, and it is okay to struggle.
The thing with chronic illness – with chronic anything – is that it’s chronic. It’s not just that you’re always tired, it’s that you’re always tired. Whether it’s your body, your brain chemistry, your job, your family, your kids, your emotions, your fandom, your beliefs: it is okay that today was a struggle. It is okay if tomorrow is a struggle. It is okay when you don’t manage, because it is a struggle. It is okay to need help, to ask for it, and to receive it, because it is a struggle. To quote Jean-Luc Picard slightly out of context: That is not weakness; that is life.
Life is hard for everyone. The mistake we all too often make is believing that everyone else’s struggle invalidates ours. That if they’re struggling, but managing, we’re failing by not managing too. Thay because my struggles are W, X, and Y, your struggle Z doesn’t measure up. Fuck that noise. Everyone has good days. Everyone has bad days. All that means is that everyone knows what that’s like, and unless they’re an asshole that’s grounds for sympathy and empathy. Share your struggles, as openly as you are comfortable. It’s not just common sense, it’s basic physics: spread the load, reduce the pressure. Even if that person cannot help, even if there’s not anything they can actively do, trust me: just knowing that there is someone else in the world who knows you’re struggling makes a whole ton of difference.
No matter who, no matter what, I am here if you need to share your struggles. We’re all in this shitty struggle-bus of a life together.