The blind fate of hiding a condition

Posted: August 23, 2015 in Uncategorized

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The sad passing of Cilla Black was mourned by the nation but one unsung element of her inspiring life was her battle with rheumatoid arthritis. It emerged that, according to close friend Sam Leach, the singer struggled with the RA but preferred to let the show go on rather than make a fuss.

Like many of her generation, she just wanted to get on with life, and work, without a deluge of sympathy but rheumatoid arthritis remains a condition of the margins. Not many chronic conditions make easy dinner party topics but RA seems to have built up a peculiar resistance to public understanding and sympathy.

No-one can blame Cilla for not making a song and dance of her condition but it brings into sharp focus how little we appreciate the damage it can do…to all ages. A misconception is that it is a disease restricted to later life -which may be the prime root of its life in the health margins – yet it strikes at the very young and is a curse of tens of thousands in their early 20s.

It affects 690,000 people in the UK (that’s around one in 100 of us) and the curious thing is that people just don’t talk about it that openly. I’m often amazed that when I raise the subject of RA, someone will know someone with it, often people approach with a quiet word in private about how their wife, girlfriend or brother has the condition. Easy admission here: I didn’t speak about it either until someone very close was diagnosed; harder explanation here: I probably thought it was an older, end of life inevitability, something to do with a physical wearing out of the bones (osteoarthritis) rather than a complex auto immune disease.

The science of the body’s auto immune pathways is fascinating and within them we are finding ways of treating a host of conditions. But RA remains steadfastly in the shadows. It is a modern puzzle.

Ailsa Bosworth, chief executive and founder of the National Rheumatoid Arthritis Society (www.nras.org.uk) reveals that the actress Kathleen Turner, an Academy Award nominee in the 1980s, hid her RA until a few years ago, enduring jibes that she had a drink problem because her face became puffy from the steroids she was on and the condition made her unsteady at times.

“I am only too aware that this propensity to ‘hide’ rheumatoid arthritis as if it is somehow shameful or unacceptable to have such a disease, is common, and not just amongst celebrities,” says Ailsa.

“It’s painful and life changing and there is no cure, although if diagnosed early and treated appropriately, there is a lot more that can be done today to keep people living a relatively normal life than for people like me and Cilla who were diagnosed a long time ago when treatment was different and we didn’t have access to the range of drugs we have today.
“People in the public eye don’t seem to have a problem admitting that they have cancer, heart disease, diabetes, asthma, dementia and other conditions, all of which have a high profile in the media. Yet with RA,  people prefer to hide their disease from friends, family, employers.

“I would like to make a plea to everyone living with RA. Please don’t hide it. We need the public to understand what RA is and what it means to live with it. In the workplace you are likely to get more sympathy if you sprain your ankle than if you live with RA.”

The drugs do work these days but early diagnosis is essential to getting RA under control before it causes too much joint damage. (RA is when the body’s immune system becomes over active and attacks the lining of the joints causing inflammation) People with the condition can life fulfilling lives but, if it stays hidden, their joints, particularly within the hands and feet, can be irreversibly damaged.

Ailsa adds: “I salute you Cilla and perhaps your battle with RA and yet your huge lifetime achievements will inspire others living with RA to start talking about this disease in the same way as we talk about cancer and dementia.”

It is a common condition. It is now time for RA to come centre stage into the spotlight.

 

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