Chronic pain plays a big part in my life. I have brittle bone disease – also known as osteogenesis imperfecta – which means I’ve had hundreds of broken bones over the years.
I also have scoliosis, so suffer from chronic back ache, and nerve damage from a spinal fusion means I have involuntary muscle spasms and discomfort daily.
Yesterday, I went to see my specialist because I have a fracture in my right femur and I a telescopic rod (which I have had in both of my legs since infancy, to strengthen them) slipped out of my knee in my left leg.
It’s safe to say it’s pretty crap and I am hurting right now.
I may be facing agonising operations that would put my life on hold – something I really don’t have time for, especially as lockdown has cost me many job opportunities and separated me from those I love.
Chronic pain is, by and large, widely misunderstood. Common misconceptions include that you build up immunity towards it. Sure, I don’t panic as much as a ‘newbie’ might when I break a bone, but it’s still excruciating.
And it’s not just the physical experience that challenges you. Mentally, this agony stops me going to work, on holiday or even being able to go to the bathroom as normal.
Brittle bone affects my life on every level.
I often have people saying things to me like, ‘It doesn’t hurt when you fracture, does it?’ or, ‘When you break a bone, is it like when I break a bone?’ as though I am superhuman or a different species who is void of feeling anything.
The fact is, I have the same nerve receptors as everyone else and, yes, it hurts like hell. If I didn’t have to talk about this I really wouldn’t, so why on earth would I make it up?
People can be dismissive when pain is discussed, and I believe this is down to a number of reasons.
Firstly, talking about someone’s constant suffering is uncomfortable for everyone involved.
If you fall off a bike and fracture your knee, your friends will wish you a speedy recovery. Yet when the condition is chronic or likely to get worse, the conversation becomes very awkward. No one can urge you to ‘get well soon’, so people tend to say the wrong thing – or nothing at all.
Secondly, those who are aching frequently underplay their impairment and how they feel. I regularly make light of the funny ways I’ve broken bones, when falling off the toilet or turning over in bed and snapping my collar bone.
I even go into great detail about my spinal fusion, where doctors drilled into my skull and suspended it with wires on the operating table, before finishing off with a quip about how I’ve never been injured during sex so, hey, there’s a silver lining.
I make these jokes because there is more to me than broken bones and I’m not defined by it – but mostly because I don’t want to make others feel awkward, or for them to see me as a ‘negative Nancy’.
My approach is a way of safeguarding myself from more trauma. Sometimes, if I don’t laugh, I’d cry and I don’t know if I’d stop.
Yet perhaps doing so also leads other people to seeing only a happy, jolly person – one they assume must be OK. It makes my suffering invisible and increasingly subjective.
And this brings me to the third reason why some are so reluctant to talk about pain: they simply don’t believe you.
I had a (now ex) friend who once told me I was attention-seeking and that I didn’t really have a fracture, despite the fact she had come to hospital with me and saw my x-rays.
Many friends who have the same condition have similar stories to tell, like Abbi Brown, who told me people in her life have refused to believe she has a fracture or that her bones break easily at all.
‘I think people find it hard to imagine being in so much agony so often, and their conclusion is that it’s impossible – they simply don’t believe we feel as much physically as we do,’ she says.
It’s particularly hurtful to get these reactions from people she is close to, Abbi adds: ‘It feels like they’re trying to minimise or dismiss our experience, as if we’re somehow lying about how bad things can get.’
If a sufferer doesn’t cry out or give up, it doesn’t mean they don’t want to, nor does it mean they don’t want or need support and sympathy.
Back when I worked in a school, a child came bounding out of his classroom and nearly landed on my lap. The fear of him doing so made me jump and in the process my arm cracked. I took some medication, which I always carry with me, and tried to wheel my chair one-handed for the rest of the day.
Did it hurt? Yes. Did I want to weep? Hell yes.
But I also wanted to get on with my job because the sporadic nature of my conditions means that tomorrow I could have another fracture, and another the day after that, and before you know it I’d never leave the house.
It’s not that I don’t feel it, I have just learned to adapt.
The reality for people with brittle bones, or any form of habitual affliction, is that if we took six weeks off every time we got injured, we’d never hold down a job, see friends or get anything done.
I’m a grown woman and don’t need someone to hold my hand every minute of every day, but my hurt is easily forgotten about.
There are things that others can do to show that we are cared about and supported, without our illnesses being diminished.
Give sufferers an extension on their work by allowing them to come in later (or better yet, work remotely); check they have enough food in the house or if you can come over and have a Netflix binge instead of inviting them to the pub.
Just because someone seems to be getting on with their lives, it doesn’t mean they aren’t struggling on an unimaginable level.
Please be mindful to check in on your nearest and dearest. And if you’re not able to do that, a basic understanding of chronic pain really goes a long way.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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source https://metro.co.uk/2020/08/25/have-broken-hundreds-bones-doesnt-mean-cant-feel-pain-13174447/
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