Chronic pain has been part of my life for thirty years. I have always had periods of pain ever since I was born, but after my spinal collapse at 15 pain has been a constant companion. In fact I grew to treat it like a separate entity, that accompanies me where ever I go, one that has moods and throws strops if I ignore it or forget to treat it with respect. Having said that, I do not let this awkward unseen friend effect my life and what I do.
Through out my life I have met other people who experience chronic pain, and have found that they have tried to find their own ways of living with it. The one common thread that ran through all the discussions was they wanted to keep the pain they were in a secret. No matter how much the chronic pain haunted their lives, everyone I spoke to asked me not to tell anyone.
A few years ago I worked with someone, who I shall called X. One day they noticed me wincing behind some filling cabinets, and seeing signs they knew well invited me for a coffee. We sat and chatted about our secret relationship with pain. They admitted that no one in our office knew, and they wanted to keep it that way. To be able to go to work they self medicated with a mixture of morphine, a legal prescription drug, and Amphetamine, an illegal stimulant. At the weekend they took a legal cannabis derivative and fell into a pain free trippy sleep. They were sure that if our bosses found out about how they coped with their pain it would be the end of their career. Years later I met another fellow of the pain, I shall call them F, and they coped with it in a very different way. They swore by alternative methods, and found that some worked to great effect. They also asked me to keep their secret.
In the past I have always tried to keep it quiet, and have even over compensated for something that no one else knew about. During my years working with on the BBC’s From The Edge program I tended to be considered their “action cripple” and was asked to do the items that involved doing crazy things. I always said “Yes”, even though I knew they would cause my pain to flare up to almost unbearable levels. I could easily have turned the job down, but felt by doing I would be letting pain control my life. I never told a soul.
As I get older I no longer feel the need to hide anything. As I tend to admit that I have issues with pain I keep finding that so many people I know have similar problems. They nearly all want it kept a secret. What is at the root of the desire to hide how much pain we are in? Part of it is not wanting to conform to the stereotype that disabled people are sickly and weak, but this is a secret kept from everyone, even other disabled people. Another factor is that look of sympathy that we get if we do admit to it. Recently I saw an old colleague from the DPU and we had a chat about the old days. When I told them about the amount of shoots I went on while in agony, I saw that look. I also wonder if we are ashamed of the pride we feel by fighting our pain. I mean the world around us seems to buckle under a head ache yet we battle through in agony. See, we’re tough. I know how great it makes me feel mentally when I do something that my pain should prevent me from even thinking about. So maybe I still an action cripple, just an ageing one.
Last weekend I met a gang of wheelchair using action junkies and one by one they all admitted that they had issues with pain. These discussions led to them all admitting that doing adrenaline fuelled stuff was their version of self medicating. One of the great parts of meeting these guys was being able to talk about pain openly. Pain and embarrassing hospital stories, but that is another blog.
Whatever the reason, chronic pain seems to be one of the last taboos of disability. Until those of us who live with it feel we can come clean, we can never really be ourselves and if we do come out with the chant of “in pain and proud” then I think we’ll find that we aren’t as alone as we imagine.
Katie Fraser says
It hurts so much Mik,because there are different levels of pain, there can be psychological, physical , and mental pain , which affect people in different ways. There can also be the pain of things going wrong and disabled people seem to get pain because of the disability they may have.
I think this is a consequence of interaction with people who don’t understand it. I had the great advantage of going to a hospital school for a time. So at that point I knew that everyone I talked to would at least not be shocked. When I did the odd class at a standard secondary school, the one time I was honest about pain levels I was met by shocked silence and an ‘oooookayyyy’ as if I’d just admitted to fantasising about skinning small children and starting a business selling really *individual* handbags.
Then there are the ‘me too’s.
‘I feel like someone is pounding large gauge knitting needles through my rib cage with a 16lb claw hammer’
‘Oh yeah, I’ve totally had that. Like this one time when I had a stitch…’
The biggest barrier for my expression of pain, however, is the lack of a physical marker. The whole invisible disability thing can be tricky, and I think pain is the trickiest bit. I’ve always been quite pleased to see muscles twitching and crawling and going into spasm because of the pain…because at least people can see that.
To have that pain questioned is stupidly upsetting. It’s not happened in a long time, but each time lives on. I was too scared to ask for pain relief for many many years because of the reaction I might get. I suffered needlessly because of my fear.
And also, because most of the time I’m pretty much housebound there have also been times when I’ve felt that the pain is all there is. Sometimes that has forced me to write about it – either directly about myself, or using the pain to illustrate a character in writing. I’ve even tried to photograph it. http://www.flickr.com/photos/spw82/4908493867
Here’s hoping you’re as pain-free as possible today.
Just stumbled across your blog. I wonder if you see any link between this blog post and the post on perceptions of disabled people as brave. You talk there about the drip-drip damage caused to public perceptions of disability by the use of terms like brave and inspiring. You say this helps to construct those with disabilities as ‘other’. I totally understand the point you’re making about the effect of language, but in the post above you’re saying it’s common for disabled people to ‘suffer in silence’. Surely from the first scraped knee of childhood we’re taught that to suffer pain without complaint is an act of bravery?! So could disabled people reclaim the word ‘brave’ in terms of the way many deal with pain? Or is the only answer to carry on masking the pain’s role in people’s lives because to admit to it would be detrimental to perceptions of disability?
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