I’m just coming out of a 4-day M.E. Post Exertional Malaise ‘crash’ and am making the most of my tiny bit of energy this morning to write about my personal observations from the past few weeks of living with M.E./C.F.S. through the lens of grief, identity, and previous lives.
Weirdly, I’ve been thinking about Phil Collins this morning. A couple of weeks ago, on social media, there was a gasp of horror that Phil Collins had aged *SHOCK HORROR* not only that but he has had mobility issues for years due to an accident. This blog was inspired by ‘Hold on my heart’ popping up on the Spotify ‘Daily Mix’ while I was upright doing the washing up this morning (I can still only stand for 2 minutes before wanting to get horizontal, got to love Orthostatic Intolerance). I don’t remember choosing the ‘chart-topping vintage songs from my youth that I can sing-a-long to’ option but here we are). I’m going to show my age now; I can remember Phil Collins popping up on a Going Live on a Saturday morning ‘disguised’ as a caretaker and causing mayhem in the studio. He came across as a really nice guy as well as an excellent drummer and singer. It’s wonderful to have such fond memories of celebrities who played a part in our youth. Maybe that’s why the difference when we seem them in poor health in older age hits so hard.
So what happens when you weren’t a celebrity, your career didn’t lead to millions of adoring fans, when your back catalogue isn’t listened to by new generations of fans on Spotify 30+ years later? You have still lived a life and still mourn the loss of that life when you become chronically sick. Whether you were Jon from I.T., Deborah the local hairdresser, Catherine the Royal Navy Captain, Paul the secondary school student, or Sally the Postgraduate student (me). WE all had lives and were living them in the way we wanted to, to the best of our ability. Isn’t it interesting how we all identify as our career or professional life before we get sick? Obviously there are some living with M.E./C.F.S who are on the milder end of the spectrum who are still physically able to work (25%) but that is usually with difficulty and many are literally having to live to work due to enegy levels not allowing anything more than that
The loss of identity in that specific way hurts at any age, everything we had worked towards to give ourselves a sense of purpose is gone.
Instead, many are forced to join those who rely on state benefits. Then our identity becomes that of a scrounger thanks to the rhetoric of successive governments. Our bodies, thanks to Mitochondrial Dysfunction, simply do not create or use energy effectively. No amount of reasonable adjustments or ‘carrot and stick’ can get us back to work.
Message to the Labour Party –
Given the amount of meetings I’ve had with many of your MPs, civil servants, and DWP staff since 2018 I thought you would have understood that by now. All you are doing is stigmatising and vilifiying three quarters of our community and causing the deterioration of our mental health. Depending on the cuts you announce later today, you may also cause physical deterioration due to poverty. Poverty that we can do nothing to rectify. I have offered emotional support and practical signposting to too many people living with M.E/C.F.S. and their carers over the past decade to know how devastating some of the rumoured cuts will be.
So, what does all this mean? Well, I guess it’s about coming to terms with the fact that we’re all just human, no matter where we are in life or how much fame or success we might have had. For many of us with chronic illnesses, the hardest part isn’t just the physical deterioration, it’s watching that identity we worked so hard to build crumble. It’s mourning the loss of the life we thought we’d have and the things we thought we’d achieve. And yet, even when all that changes, we’re still here. We still matter.
It’s a strange thing, this grief. It’s not just about the loss of health, but the loss of a life we once knew. A life that, even in its ordinary moments, brought us pride. So here’s to those of us still trying to find meaning in a body that doesn’t cooperate. Here’s to not letting anyone, not even the system, define us by what we can’t do. We’ve lived our lives, and no matter where we go from here, those lives still matter. And maybe, just maybe, that’s enough to keep going.
Sally
Person living with M.E./C.F.S. and Managing Director – Stripy Lightbulb CIC.
Absolutely we matter and we have skills many others are still yet to learn. When it eventually hits them in older age it will hit hard. We however will carry on, for as long as we’re able.