Now this one is tricky.
It’s not a “poor me” post – I got over the slam-dunk years ago. It’s not a “people are rubbish” post – no-one can understand what they don’t yet know. It’s a “solidarity spoonies” post. Only spoonies will understand it or even perhaps completely believe it.
Chronic illnesses come and go. Some weeks they’re bad. Some weeks they rage through your life, scattering pain and misery beyond comprehension. They leave you bed ridden or writhing in agony or fighting for survival.
Other weeks, you might look just like everyone else. Of course, that doesn’t mean you feel like everyone else, but it means you can make a fairly good stab at pretending. You can “play well” with a few naps and some carefully targeted lip gloss.
Chronic illness often affects young people too. The teenage lottery of life can play it’s genetic give-away cruelly, at any time. Just as you’re meant to be partying and studying and falling in love it rolls up with callipers or sick bowls or chemo.
Nothing is more at odds with nature than someone who is young and sick. Our Darwinian evolution cannot compute. Millennia of genetic experience tells us, somewhere deep in our souls, that this “cannot be right.”
And it scares us. A whisper creeps into our hearts: “That could be me.”
At first, a sick friend is a brave friend. New acquaintances gape at your drug drawer or hear your medical stories with horror. They marvel as you dislocate your own wrist or shove a needle deep into your own thigh. The trouble is, after a while, a sick friend is a boring friend. You can’t make that long-planned spa weekend or 30th birthday party or meticulously planned wedding. You stay in bed too much, you can’t do the housework or eat the meal a friend has carefully cooked for you.
You forget birthdays. (Though if anyone had asked, you probably couldn’t remember your own name that day). You can’t work and have to make the best of it with a wall to wall diet of daytime TV. If you’re really lucky, like me, your partner eases quietly into becoming your carer (again) and has to bring you meals and cups of tea and change your sheets and take over the childcare.
Weeks go by, months even and you disappear from view. No school runs, no days out, no trips to the park, no weekends away and you don’t even notice. Your focus has shifted. All that matters is “I must survive this” (again) You don’t notice that the phone has stopped ringing or the doorbell is quiet.
Later, when the crisis has passed a little you take stock: Alive? Check. Roof still over head? Check. Friends? Not so much.
Every single time, someone, somewhere will have slipped away. You realise they haven’t popped in for coffee. You realise the phone never rang. Soon enough you hear why and though it hurts less over the years, it never quite stops hurting altogether.
A few days ago, it occurred to me that “School Mum 1” and “School Mum 2” were being a bit weird. Despite it being 3 months since my operation, it’s only really now that I’m able to walk to school or tidy up or go out for lunch again. The School Mums are not close friends, they’re acquaintances. Nonetheless, we’ve had some fun, helped each other out and dried each other’s tears.
As the story unfolded and I did a little digging, I found my 2011-post-op-Sickie Friend Slam-Dunk.
The gossip is familiar. I’m lazy, I “play on” being ill. I treat my husband like a doormat.
I never tidy up, my house is a mess, I neglect my children.
Ouch, ouch and ouch. “Ouch” because though I know it doesn’t mean anything, every criticism is based on a little truth. When I’m sick I do appear lazy. My husband does have to do everything, I can’t tidy up or look after my kids. All of my secret fears and guilt exposed and confirmed.
Happily, other school Mum’s stepped up. They knocked out of the blue and took my kids out for the day. They called now and then to see how I was. They supported Dave at the school gates with his dark circles and face etched with worry. My neighbour regularly appeared with home made Gumbo or bags of supplies.
So why am I writing about it at all? What does it matter if some thoughtless, selfish Ms Average judges me?
Well, on a personal level, it doesn’t matter at all, but on a national level it matters very much. If people who know me and see me vomit and see the tube in my nose or the needle in my leg decide that chronic illness is just an excuse to lie about the place like Victoria Beckham on a Malibu beach, then what hope do I have of persuading the cabinet that people like me should be considered in the benefit system? Or helped into work? Or treated with compassion and understanding.
The sickie-friend-slam-dunk always reminds me just what an uphill battle that is.
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