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Invisible conditions: Carol's story

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While Carol may look perfectly healthy, she suffers from rheumatoid arthritis (RA) an invisible illness that severely affects her day-to-day life

Carol

“Most people believe that you can only get RA when you’re older, but I was only in my early 30s when I first started displaying symptoms. I was working in catering chopping vegetables with a sharp knife. When I went to put the knife down, I couldn’t unclench my fist. It was such a strange feeling, not being able to control my body.

“After that experience my doctor diagnosed me with RA and the aches and pains really started to affect me. Doing simple things like getting dressed and doing the housework left me in agony.

By the time Carol met her now husband, Trevor, in 2004 her RA had spread to her hips and knees.

“When my RA worsened, Trevor became my carer. Not only does he do the cooking, the shopping, cleaning and gardening, on my bad days, he helps me shower and dress. We still do things like go on holiday, but we have to spend longer planning them.

“People don’t always understand illnesses like RA, that aren’t immediately visible. We get stares when we park in a disabled space and sometimes, Trevor feels like rushing over to these people and explaining that I have RA. It’s stressful, but I let it go.”

While the experience has been stressful for Carol, receiving excellent care from her GP has really helped.

“Thankfully, my doctor has been very supportive and explained very thoroughly what I’m going through and the different treatment options. I’ve felt very involved.

“Although I know my prognosis isn’t good and we’re currently remodelling our bungalow for when it’s time to get me a wheelchair, having the support of Trevor and my GP really makes a difference. Yes, I have my bad days but I don’t focus on what I can and can’t do, it’s about taking things as they come and making the most of each day.”

If you have an invisible condition, you may use health and care services regularly and know a lot about the quality of care. CQC need you to tell us about your care, good or bad. Your information will help CQC inspectors decide when, where and what to inspect and it could stop poor care happening to someone else in the future. Use our online form to tell us about your care.

Last updated:
29 May 2017

 


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