Karen's sharing her story to push for change for people with arthritis

24 September 2020
Karen at home making tea and on her laptop.
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Karen is 46 and was diagnosed with rheumatoid arthritis in 2002. She’s a mental health support worker for the NHS and a part-time actress.

“I have rheumatoid arthritis, osteoarthritis, asthma, and I’m also from the Black, Asian and Minority Ethnic (BAME) community,” she explains. “All of this puts me at higher risk, but my GP hasn’t been supportive of my decision. I didn’t get a shielding letter, and I'm not in the system as someone who is shielding.”

She’s one of many people with arthritis and related conditions who’s found the information and support provided to her during the COVID-19 pandemic to be confusing. And that’s why she’s working with us to tell her story and push for change.

Karen’s surgery journey

Although she loves her work, it eventually became increasingly difficult to continue due to her condition and the pain she was experiencing.

In 2019, Karen had keyhole surgery on both her knees to try and repair her torn ligaments and disjointed knee cap.

Although the surgery helped, it only lasted a short while before her symptoms returned, and in January she was forced to stop working due to the pain. She's not been well enough to return.

Despite being informed that the next step would likely be a knee replacement, Karen was disappointed to hear that a decision had been made to have the same keyhole surgery on her left knee again.

This took place in June, and although she praises the treatment she received at the hospital, she’s concerned that her knee will break again.

“I had the same operation last year and the results didn’t last long, so I was dismayed when I found out it wasn’t going to be a replacement surgery – especially as I'll still need a knee replacement at some point. I can’t help but wonder if the decision was made because of lockdown.”

Pushing for change

One of the worst things for Karen has been the isolation, and the guilt that she’s letting her NHS colleagues down.

“I’m generally an upbeat person so I’ve been able to deal with it, but it’s becoming hard to keep going physically and mentally.”

This is where getting involved with the Impossible to Ignore campaign has been important. Like 20,000 other people, Karen, who hated being stuck at home, decided to sign our petition and contact her MP. From there, she got in touch with us to share her story.

“This has been my saving grace, being able to help out and do something positive,” she says. “I thought to myself: I have skills, as a mental health support worker and actress, and I wanted to use those skills for something positive, especially when I have a lot to say on the subject!”

Making a difference

Our campaigning and influencing work relies on the stories and experiences of people with arthritis. Knowing what people are experiencing, and knowing what matters to them, is an important part of shaping the direction of our work.

Your stories are also a powerful tool in helping decision-makers understand the reality of living with arthritis and what needs to be done to make things better.

Since sharing her story with us, Karen has had the opportunity to speak about her experiences on the local radio. Getting the message out to people in her area was incredibly important. As Karen said, “every little thing that gets the word out helps”.

Your stories matter

Karen has been invited to share her experiences with politicians and decision makers, ensuring that her voice, and the voices of other people with arthritis, will be heard.

And that, Karen says, is the most important and powerful tool.

“The story matters. People matter. Investing in community, investing in the conversation, investing in people – we can get things done, we can get the research, we can get people to feel better about themselves.

People’s stories are what makes the world go round. If we didn’t talk about it, the majority of things would still behind closed doors and people would be suffering in silence.”

“That’s the worst fear for me: not being heard.”

Get involved

Join Karen by sharing your story with us and ensuring that the voices of people with arthritis are impossible to ignore.

We’re here whenever you need us.

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