Of late, I’ve been spending far too much time with Arthur.
Arthur isn’t my husband, nor yet my friend. You might say he’s a house guest, someone who came to stay that I can’t get rid of. An unwelcome bedfellow, he keeps me awake, jabbing me in the knees and feet and hands. When I’m up and about I have to take care or he’ll trip me. He’s mean.
As anyone who has recently seen me on crutches might have guessed, Arthur is my nickname for osteoarthritis, the disease which, for well over 20 years, has been damaging my bones and joints.
To be clear, this is nothing special. I am one of 10 million people in the UK with the condition. That’s six million women and four million men.
Osteoarthritis is so common there seems nothing interesting or remarkable about it. Yet as the website of the charity Versus Arthritis states, it intrudes “on everyday life – affecting the ability to work, care for a family, to move free from pain and live independently”.
It’s incurable but can be managed (to an extent) with painkillers and exercise and, if the worst comes to the worst, with injections and surgery.
I, for example, now have two titanium knees. I amuse myself wondering whether my new knees originated in South Africa, as I did.
People don’t take the disease seriously. My grandparents’ generation, the one that took us through two world wars, referred to it as a “bit of rheumatism”.
When I was diagnosed decades ago with “early-onset osteoarthritis” I came home laughing. I thought it was funny. I’m not laughing now.
Sufferers are still expected to put up with it, probably because they tend to be older and most are female. Doctors deny ageism and misogyny but many patients complain that medics minimise their suffering and pain.
Doctors claim there’s little they can do to treat the disease medically but that doesn’t explain why there is so little focus on effective pain relief, holistic care and prevention.
The disease is largely managed – and its costs met – by patients and their families, supported by over-the-counter pain relief.
NHS care is ruthlessly triaged and delegated to physiotherapists who decide if and when a patient could benefit from an exercise class and whether a particular joint should receive assessment or treatment.
The result is that the first orthopaedic specialist most sufferers see, often after years of pain, is the surgeon who is going to replace their hip or knee.
That surgeon’s primary focus is the joint and not the overall impact of the disease on the patient – so an opportunity to assess general care and review pain relief is lost.
Doctors may comfort themselves with the thought that the disease rarely kills people. Except of course, it does. My father died of stroke, his brain already damaged by falls-related head injury.
However, it started with arthritis. He couldn’t exercise without pain so he stopped walking. His weight and blood pressure crept up so he became depressed and isolated and spent too much time in bed.
He lost balance and fell several times. In those days before statins, stroke was the almost inevitable result. Stroke might have killed him eventually but he lost years of what could have been a happy, healthy and productive old age. Dad was an actor, a good one.
Arthritis also humiliates people. I remember Bessy, a retired nurse, who had worked for years in a local hospital. Even now I still occasionally meet people who remember how wonderful she was. She spent years helping sick and distressed people but, in old age, lived alone without assistance.
Arthritis crippled her hands so she struggled to dress herself. I only realised when I saw her trying to drink a cup of tea while desperately holding her cardigan across an unbuttoned blouse.
I could help her on that occasion but she was a dignified woman. She rarely went out and, like my father, she too died of stroke.
Given the devastation caused by the disease, I was horrified to learn that the government’s proposed cuts to disability benefits, including personal independence payments (PIP), will disproportionately disadvantage older people.
More than half of those over 40 will lose payments while only a quarter of those in their twenties will be hit.
Liz Kendall, Work and Pensions Secretary, has recently acknowledged that older people with joint and back pain will be the worst affected.
She has accepted that more than three-quarters of those claiming PIP for conditions like arthritis and back pain will lose benefits.
This is extraordinary given that many disability benefits (including PIP) can’t be claimed by people over retirement age while older claimants under retirement age are likely to have developed the disease as a result of heavy, probably badly paid, manual work. They are unlikely to be able to perform similar work again. To strip them of disability benefits is cruel.
As I write this, I’m called to tea. I’ve been sitting two-finger typing for 30 minutes so my feet and knees have locked.
I haul myself up from my desk and lurch and totter flat-footed like a duck down the hall. I hang on to the banisters and walk down one step at a time.
By the time I reach the kitchen, my joints and muscles have eased and I can walk without support, though still with pain.
Thank God I don’t rely on benefits.
Jean Calder is a campaigner and journalist. For more of her work, click here.
