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For more information, go to www.arthritisresearchuk.org

Anne's story – Let’s be honest about the hidden impact of arthritis

Arthritis Today Summer 2017 Issue 173Anne Kearl in a country laneAnne Kearl, 55, was first diagnosed with osteoarthritis in her spine twenty years ago. Chronic back and neck pain affect every aspect of her life, contributing to her giving up work aged 52, but this impact is often hidden and rarely understood by others. This is something Anne believes needs to change.

"Pain is normal to me. It’s always there. I may paint a smile on my face, but I'll be hurting all over. You get used to it, but it does grind you down. It’s had a big impact on my mental health; pain and depression feed off each other and in my experience, it’s hard to separate them out a lot of the time. I never know when I wake up if I’m going to have a good day or a ‘just got to get through it’ day. That’s the reality for me of living with arthritis.

"But, because arthritis is invisible and because I don’t want people to think I'm being grumpy and making a fuss, people other than my family don’t see the reality. When friends and colleagues can’t physically see anything wrong with you, they assume you’re OK and often I let people think that rather than be honest about my arthritis.

"For example, this week my husband and I are meeting up with friends for the day. I’ll probably put a lovely photo on Facebook of us out having fun. What people won’t see is the impact that one day out will have on the rest of the week. I'll have to rest for two days beforehand, so I don’t tire myself out before I go. Then I’ll dose up on painkillers to manage the pain while we're out. It’s likely I’ll spend the next two days in bed just to recover.

Why it's so important to change attitudes

"I’ll let people see the nice day out with friends, but behind the scenes there are real consequences. This hidden impact is why it’s so important to change attitudes and help people understand more about arthritis. If that understanding was there, perhaps I wouldn’t feel as ashamed and would be more honest. I might feel able to post on Facebook, 'Brilliant day yesterday, but I'm really paying for it today'."Be honest about the days when you're struggling and tell people when you have a problem."

Anne believes a good first step is encouraging people with arthritis to feel able to talk honestly about their condition, at home, at work and with friends. She says: "When I've talked openly about my arthritis, particularly when I was still working, it has made it easier. I’d say to anyone, be honest about the days when you're struggling and tell people when you have a problem. We don’t do enough of that in Britain, there's still a stiff upper lip culture saying, 'Keep calm and carry on' and that we must all be brilliant and feeling good all the time. This makes it so difficult to admit that you’re not OK.

"We need to remind people that you may see a smart woman walking down the street with her make-up on, but you have no idea what’s going on behind closed doors. It might have taken her an hour to get out of bed that morning or she may have had to dose up on painkillers just to get out of the house. When you have arthritis there’s a face you show to the world and perhaps by showing what’s behind that we can get the understanding and support we need."

Read next: Preventing the pain of osteoarthritis – do molecules and proteins hold the answers?

A researcher in a lab inspecting a petri dish

Fifty-seven percent of people with arthritis experience pain every day. We’re focusing on two studies dedicated to understanding more about pain in the hope of developing breakthrough treatments for osteoarthritis.

For more information, go to www.arthritisresearchuk.org.
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