On Sunday I attended the Scotland match against Norway.
Had the occasion not felt so important to me, circled in the calendar since January, I might’ve decided against going. As an ME (Myalgic Encephalomyelitis) sufferer, I felt the usual warning signs of a fatigue crash in the same morning but they were milder than the ones that physically stop me leaving the flat.
As with anything I do in life, a positive frame of mind is absolutely essential to get over the line… and as with many inevitable fatigue crashes, the overwhelming feeling of excitement overrides caution. It’s a difficult balancing act.
I like to think of it at times as a trade-off. A wee deal in my own mind between suffering and pleasure. Allowing myself to do one thing leads to x amount of suffering, and this puts my mind at ease when I’m lying in the darkness in pain waiting for symptoms to go away.
The calculations in your head don’t always materialise though.
A match that had 4 goals in the first half should’ve been a dream come true in terms of the excitement I sought when heading to the match, especially watching my favourite ever footballer, Super John McGinn, absolutely run the show… but I could barely enjoy it through the aches and pains.
They came in waves, to be fair. The Capri sun + scotch pie combo that my mate brought me at halftime gave me the energy injection I needed to get me through the second half… but I was a shell of a man leaving the stadium.
This feeling wasn’t exclusive to health sufferers, in fairness. The whole stadium was flat after Norway’s late equaliser. The kickoff time, late on a Sunday night, didn’t help. Anyone having a cuttla beers to soften the hangover will have hit a post-pint lull during the game.
What followed, however, was exclusive to sufferers of my condition.
I barely said a word on the journey home as I got a stark reminder of how bad ME can be. Overwhelming aches and pains. The kind of headache that makes you want to crawl into a dark hole and hibernate forever. The kind of throatache that ruins your voice and pains you at every swallow.
And in the 40 hours that followed getting home from Hampden, I slept for a whole 32 of them. Only this evening, 65 hours later, are these aches and pains going away.
Minor lengths in time, I might add, to when my condition has been at its worst.
I’m not looking for pity here. I’m a stronger version of myself mentally because of my illness and there are many worse off than me. I feel lucky despite my hardships.
I just wanted to contextualise my reaction to today’s Autumn statement.
And as top-level Government Ministers are unable to watch their language as statements of this kind are made in Parliament, I’m not going to pay them the same respect… I am sick to my f*cking back teeth of seeing people in my community going through judgement, stigma and prejudice whilst being forced to pretend they’re okay.
This will be a sentiment shared by many communities as the Chancellor begins his attack on the sick and disabled, I’m only hoping to inspire by swinging back from my corner.
The highlights, aside from the overall messaging of forcing the sick and disabled back to work with the threat of financial sanctions, were as follows:
18 month cap on unemployment help
If you don’t comply with our working arrangements for 6 months, your benefits will stop altogether.
There will be an extra £1.3bn invested into helping sick and disabled people back to work, through treatment services and coaching.
Fit note reform so people are treated rather than given time off.
Some may find a lot of this reasonable, but this will send shivers down the spine of the ME/CFS community – just one of the many groups of sick and disabled that will feel similarly this afternoon.
Why? Well, let’s start with the 18 months cap.
It took me many years to get my diagnosis back in 2020. Sure, my symptoms were moderate for much of this time and I was lucky in this regard compared to many fellow sufferers… but it still affected my mental state.
Long spells of illness led to harassment by my bosses. They accused me of lying about my symptoms and took wages off me as a result. I managed to get two weeks off from my doctor... when I returned, my anxiety got worse and eventually had no choice but to stop working altogether. Frequent panic attacks, stress and, as a result, sleep problems all contributed to a truly traumatic experience – the words of my allocated therapist at the time, not me. This lasted over 6 months.
Then came Covid.
Like the experience of many others with fragile immune systems, Covid drastically exacerbated the symptoms I was already struggling with. The headaches, the viral flu-like symptoms… everything was 10 times worse. I was bed and couch-bound for 6 months straight. Only with extreme caution and patience did I edge back to normality over a longer period. Altogether, comfortably exceeding 18 months.
Jeremy Hunt is saying today that, if you’ve been through anything like this, in a timeline similar to my experience… we are going to stop your benefits. You are undeserving of any more support.
I have been incredibly lucky that I’ve been able to live with either of my parents and survive on the absolute barebones of income during this time. I’ve also been through long spells of lockdown, in which economic standstill meant I could simply focus on getting better. And now, I cope a huge amount better.
This might seem ridiculous looking back on a time in which a virus forced such a long, horrendous period for me in such a positive light… but being able to pause, gain clarity and recognition of my condition and have the time to work on my mental health without the world around me going a million miles an hour actually feels like a gift looking back.
Not everyone’s had this good fortune though. There are many ME sufferers with symptoms more severe than mine. There are many with families to feed, with bigger bills to pay and worse mental struggles to deal with.
The Chancellor has said today - unless you've had recognition of a particular class of benefits, something that's really difficult for ME and other invisible disability sufferers to achieve even if needed - that they’re undeserving of further support.
Let’s take the next point of ‘if you choose not to comply with our arrangements, your benefits claim will end.’
Correct me if I’m wrong, but there are very few working environments that accommodate specifically those who suffer moderate to severe ME.
Besides volunteering, the only suitable and achievable work I’ve managed to find is either work-from-home call centres or communications work from looking after people’s emails to social media marketing.
The former of which can be incredibly straining on symptoms, and the latter is incredibly competitive. The last job I applied for was reasonably niche, based in a low-populated area, and had well over 100 candidates.
And imagine being that person with ME among all those candidates anaw. Let’s not pretend there isn’t sub or conscious bias going on.
And even putting aside all that, it’s the other two that really struck a nerve.
I’ll never criticise investment in mental health treatment… but when doing so at a rate lower than inflation, alongside a reinforcement of the archaic stigma attached to mental health struggles that’s when I take issue. Serious issue. Especially when transferring this stigma onto other health conditions like mine.
Telling people ‘you’re fine, you just need a wee bit encouragement,’ and that it’s your ‘duty’ to stop fannying about wae whatever issue you’ve conjured up in your mind, is not only insultingly discriminatory but also incredibly backwards in thinking. The people I speak to with ME would give anything to have a normal life.
Do you really believe everyone out of work wishes financial instability on themselves? Do you really believe people would want to willingly detach themselves from society and take hypothetical supplements that make them feel worthless?
Poverty and stress are enormous killers in our society. Many don’t need to be reminded of that study by the University of Glasgow that found 330,000 excess deaths that have come from austerity.
This made me particularly ragin because of the judgement, stigma and prejudice that is felt by people in my community leading to horrendous mental health.
‘Lazy’ we’re labelled. ‘At it’ we’re accused of. ‘Mentally unwell’ we’re diagnosed with and the stigma some attach to it.
I can’t stand it when folk that suffer ME/CFS are asked to pretend like we’re okay to fit in. Like there’s something we’re refusing to try get better. Like we must be inherently pushing away solutions. Like we want to be sick.
Because if we don’t pretend, then people think we lack some sort of bottle. There must be something wrong with us. Our confidence must be short.
Until you’ve walked a mile in someone’s shoes, don’t even dare tell them what’s wrong.
If you think that counselling will magic away sick people's problems, or that the advice and research in ME is enough to go off, then you’re either deluded or ignorant. I fear the Chancellor is both.
Not once did he say he’d work with sick and disabled people. Communicate with them. Reach out to how they can help with what’s going on in their life.
What he really wants to do, going off what I’ve heard, is validate the voice of those saying ‘You’re at it.’
Unite the people that hate others to make themselves feel better because their lives are shit as well.
All for ulterior political gain.
Aye, cos it’s our fault because of Brexit labour shortages, an economy that’s shrunk, the Trussenomics mortgage premium, energy bills and a worsening value of the pound. That was all the sick and disabled’s fault.
Absolute liberty taker. Chancer of the Exchequer.