For over 15 years, I have had debilitating fatigue. It has been impossible to get this taken seriously by medics, or for many to even admit there is a problem.
This is going to seem a little like a stream of consciousness, for obvious reasons.
Throughout my time as a skinny queer coasting my way to straight-As, I spent most of my time in my Sixth Form asleep in the common room or asleep in lessons. I slept on the way to school and back home (until I was driving myself – which I did until I had a fatigue-related motorway accident), I slept or zoned out in every moment that I could. I got away with this because my mother was a teacher and my grades were perfect. It came naturally to me.
At 16, I first realised that I was not merely sleepier than most. I sought medical help and was told I was depressed. I was, in fact, also depressed, which muddied the waters. I took anti-depressants, it did not help. Since then, I have routinely begged various of GPs to take this seriously and see if there is anybody that they can refer me to, or anything that can be tried. ADHD medication, B12 injections, new different antidepressants, a referral to some kind of specialist service.
I have been told the following:
“It’s normal to have fatigue as you get older” (ignoring that I have always had this)
“It’s probably because of your HRT” (I had these symptoms since before I transitioned)
“It’s because you aren’t exercising enough” (I had these symptoms while still very active and climbing mountains on my holiday)
“It’s stress”
Because this is comorbid with depression and stress – a lot of which is due to the struggles of living my life while wading through a thick-soupy fog – the issues are usually attributed to these. Anybody who spends much time with me immediately realises that my fatigue is profound and all-reaching. I have had friends and partners come to appointments to advocate for me, and get brushed off with a sneer.
Much of the reason for this dismissal, I think, is that I have managed to muddle my way into just about surviving. I managed 5-ish years as a House of Commons clerk (with an extreme amount of long-term sick and periods in which I could get nothing down at all, culminating in a nervous breakdown, a divorce and resigning). I have since bounced from short-term job to short-term job. I earn less now, even in nominal terms, than I did in 2017.
In every job I’ve had since them, I had been told – at various levels of overtness – that the perception is that I am slumming it, that I am “too good” for whatever admin that I am doing. This is sometimes given as the reason for my disengagement, lack of focus, inability to knuckle down and do work. Take this week for example – I have a lot of work to be getting on with, but even during my waking hours I find it impossible to corral my thoughts. During leisure hours I mindlessly open a game on steam, find I can’t focus on it, close it again, watch a video on youtube for 30 minutes, find I can’t concentrate, close it, go to lie down. I am literally slack-jawed. The work piles up and it is only the occasional jolts of terror at the prospect of losing my job, again, and therefore losing my home that means I keep doing work in the nick of time, at the weekend, at low quality.
But because I keep holding on to jobs – helped by the fact I find it relatively easy to *get* jobs, mostly because of my job history. Given the unstructured time of unemployment, I can craft an excellent application. I get a burst of energy when I start new jobs that lasts about a month at most.
People used to say to me that I am clearly too mad to work, and that I should look into getting on Government support. But I know that is not an application that would be successful. The fact of the matter is that some of the time, I can work. But employers are rarely sympathetic to the idea that I might be able to work for a few hours a week, and while those hours will be extremely productive I cannot predict when they will be. I can mostly feed myself (I wouldn’t say ‘cook’ for myself), I cannot keep my living space tidy. But I appear functional enough, and feel functional enough that I will not be applying for Government support.
Because this is episodic, I can do an impression of being well for weeks at a time, in a good year. Then, apparently without warning, I become useless. I start letting people down, I miss commitments, and I am unable to give an estimation to people for when I will be well again. And that is when I start losing jobs.
There are times, often, when the thickness of the fog bank causes me to go into the deepest despair. Now is one of those times. It has put me in a position of wanting to try something – anything. I don’t know if I have ADHD but I would love to just *try* the medication. Just *try* a B12 injection. On spec. That should be allowed. Hell, I’ll pay for the damn things in full.
I said this would be an unstructured mess – I find that streams of consciousness like that are something I can do, it’s not true focusing as I am barely refining my thoughts as I type them. There is a great weight in the back of my head, keeping my thoughts depressed and my ambition low. There are so many people out there with so much potential that is not realised because something in them forces them to live their lives walking through a fogbank.
Natalie O'Connor 