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More often than not, pain is part of everyday life when living with an autoimmune disorder. Your body is essentially attacking itself and on some days you better belive it’s going to remind you of that. I am currently going through one of those spells and in the spirit of what I set this blog up for, alongside as a support tool and resource for others, allow me to vent in this post. In the name of self-help, of course.

I am normally very good with pain. It’s been a constant in my life since I was 11, however, I have noticed as I get older and especially after a period of remission, I am not as skilled at pain management as I used to be. My patience wears thin quicker. I get more agitated and unfortunately it also becomes more than just my problem these days.

I always dealt with pain in a certain way. Ever since I was a school boy. My parents and later, my wife, all knew I was in pain if I went quiet. Focussing on the internal battle of thousands of nerve endings. I rarely cried out or groaned, even as an 11 year old. However, as I’ve grown older I’ve become a shuffler. Not being able to lay still in bed or remain seated as the pain ramps up. I find myself fidgeting, itching, rubbing my hands together or drumming with my feet.

I find it hard to believe its because the pain has increased. I mean, it’s a perfectly reasonable assumption with years of damage but I have some pretty horrific memories of pain when I was a child; the week in traction springs to mind when Drs thought my issues might be growing pains. So why not hang a load of weights off of a child’s arthritic hip and knee!? The thought of that week still gives me the chills.

Perhaps its years of painkiller use, I’m mentally weaker after all the battles or as I get older, I am in some way not as well equipped to deal with it as when I was a teenager and it was all I knew. I didn’t get my first period of remission until I was 18 after onset, perhaps I was in the groove with my pain then?

It isn’t the fact I don’t seem to be able to handle pain as well that bothers me but that I am so readable now. Ever since I was first diagnosed, I have hidden my pain and condition where possible. I saw it as a weakness, an opportunity to be disadvantaged or left out of something or a characteristic that made me unattractive. All natural conclusions and defence mechanisms when dealing with limps, crutches and wheelchairs in the brutal environment of high school. So now that my wife, family or even, recently, work colleagues, are starting to notice that I am in pain makes me feel extremely vulnerable.

The cats wriggling out of the bag and I’m not sure I even want to start discussing it with those I know, even after 20+ years.

Do you suffer with chronic pain? If so, my questions to you are:

  • How do you deal with chronic pain?
  • Have you found it harder to deal with as you grow older? If so, why do you think that is?
  • Do you hide your illness or pain from others?

I’d love to hear from you in the comments and via email.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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