Most of us will experience backache at some point in our lives. Usually it lasts a few hours or days and then goes away – but what if it doesn’t?
Back pain that won’t go away sometimes signals a more serious condition. In the UK, 1 in 200 people live with AS, a type of arthritis that causes joints in the spine to become inflamed.
AS stands for axial spondyloarthritis or ankylosing spondylitis. It occurs when the immune system mistakenly attacks joints, although researchers don’t yet know why.
Saturday, 2 May is World AS Day. This year’s theme is mental health, which is always a critical issue but particularly pressing right now.
New research has shown a significantly increased risk of mental health issues – including depression and self-harm – in people who suffer from AS. The coronavirus crisis is only adding to that pressure.
A life of constant pain
Despite being more common than multiple sclerosis and Parkinson’s disease, AS receives far less attention.
Perhaps that’s because people relate arthritis to swollen fingers in the elderly. In fact, the average age for AS diagnosis is only 24.
Lauren Rickard was 22 and says no-one around her had even heard of the disease before she was diagnosed five years ago. For her, the “lack of a cure” is the worst thing. She adds: “I worry I’ll become unable to do things for myself.”
As well as the pain, AS causes damage that gradually worsens. At its most severe, sufferers develop a “bamboo” spine. This happens when new bone growth causes joints in the spine to fuse. Some people even become permanently stuck in a stooped position.
Thankfully, AS treatments are improving all the time so few people face this terrifying future.
Still, many people with AS live with constant pain and stiffness. A basic task like bending down to put socks can become agonising, if not impossible.
Complications often arise such as uveitis, which causes blindness, and osteoporosis, which can lead to fractures.
Risk of self-harm and depression
The emotional toll of living with AS is huge.
Dr Nigil Haroon, author of a recent paper on self-harm in AS sufferers, says: “AS is known to have significant mental health issues. Suicide was a main cause of mortality in this population in previous studies.”
His study used data from A&E departments in Ontario, Canada. Results revealed an increased risk of deliberate self-harm in AS patients. The risk was 59% higher for people with AS than those without.
Another recent paper found the risk of depression was also higher in those who suffer from AS. Reviewing studies from five countries, Dr Mary De Vera found a 51% increased risk of depression for people with AS. There was also evidence suggesting a possible 85% increased risk of anxiety.
There are numerous reasons behind these findings. Lauren says: “Having AS makes me feel out of control and being in constant pain can make me feel helpless and hopeless.” However, she adds: “It’s fear of how my disease will worsen in the future that keeps me up at night.”
Dr De Vera suggests another cause for depression is the “social isolation and loneliness that may be prevalent among individuals with AS”.
Lauren agrees, saying: “I’ve tried to stop feeling guilty for having to miss work or social events, although it’s hard, especially when I don’t think people really understand what it’s like.”
Lack of mental health support
Sadly, people with AS can struggle to access the right support.
One problem is it can be hard to spot signs of depression. Dr Haroon says: “Mental health issues are less obvious in AS patients, who are young and generally not forthcoming.”
The disease is also more common in males, a group already less likely to seek help for suicidal thoughts.
“During clinic visits we have to be diligent and probe for mental health issues,” he says. Unfortunately, the pressure the NHS faces means AS patients get little time with specialist doctors at the moment.
Dr De Vera says a study of another type of arthritis found less than 20% of patients with moderate to severe depression discussed it with their rheumatologist.
The impact of coronavirus
Coronavirus is making life even more challenging for people with AS.
Some AS treatments suppress the immune system, making patients more vulnerable to infection. Regular exercise, especially swimming, is also vital for managing symptoms but impossible during lock-down.
Dr De Vera is leading an international study to see how the pandemic is affecting the mental health of people with serious conditions. Anyone with AS can sign up and she “would love to see AS represented”.
Understanding the challenges patients face will help doctors provide the best care possible.
In the meantime, Lauren’s advice for other people struggling is: “I try to remind myself my situation could be worse but I’m suffering and it’s ok to have bad days. I’ve started practising mindfulness to help maintain a positive outlook.”
She’s also a member of the UK’s only dedicated AS charity – NASS. The charity is currently handling record levels of requests for support but hits to fund-raising income mean it’s struggling to meet demand.
NASS has launched an appeal and is urging the public to donate so it can help people like Lauren.
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