Arthritis - Scotland's hidden misery where half of sufferers feel isolated and even worry about intimacy

Half of sufferers are unable to even ask for help and say they feel lonely on a regular basis. That feeling of isolation rises to three in four among 16-34 year olds.

The research commissioned by the Versus Arthritis charity say nearly half of people with Scotland had to give up work because of their condition and 53% have had to reduce their working hours. And over a third (35%) have had to reconsider the career they wanted to pursue.

The charity found that the condition severely impacts people’s independence, family and social lives, and ability to move without pain – contributing to an average five-year reduction in quality of life.

They said that half of sufferers feel those without arthritis do not understand what it’s like to live with the condition.

The charity said: "The lack of public understanding of arthritis, which can strike at any age, is creating an 'epidemic of isolation'".

"The impact of arthritis on these areas of life is further exacerbated by a severe lack of understanding and trivialisation of the condition among the public. This stems from the condition’s ‘invisibility’, fluctuating nature, and many people’s reticence to speak out."

And Versus Arthritis - the organisation formed by the merger of Arthritis Research UK and Arthritis Care said it is not something anyone person or charity can solve.

"We all need to come together to stop accepting the current status quo of just accepting the condition," said a charity spokeswoman.

"An action plan that we’ve set out which sets out asks of people across society for changes urgently needed to increase public awareness and understanding and help people with the condition live better."

In Scotland, arthritis is the biggest cause of pain and disability, with 1.5 million people or one in four people living with some form of musculoskeletal condition. Rising numbers have been blamed on growing obesity levels and Scotland’s ageing population.

Around 85% of sufferers have the most common form osteoarthritis - which is caused by wear and tear on joints where the cartilage that cushions movement is worn away.

Currently around 37,000 suffer from rheumatoid arthritis - an autoimmune disease in which the body’s own immune system attacks the body’s joints.

The often crippling condition - which has no cure - sees the immune system turn on the tissues in our knees, elbows, wrists and other joints.

It is typically diagnosed in people between the ages of 40 and 70 and affects three times as many women as men.

Dr Fiona Chikusu, GP and clinical adviser for Versus Arthritis, said: “Many of my arthritis patients deal with their pain in silence because they assume nothing can be done for them or that it’s just something you get in old age.

"And because symptoms can fluctuate, it can be hard for them to explain just how serious the pain can be. But arthritis can affect you at any age, and the pain many people experience is tremendous. The impact and scale of arthritis needs to be recognised, so that more people affected speak up and get the support and care they deserve.” 

The research developed in partnership with the University of York and polling firm Nordstat also revealed that half of people with arthritis in Scotland feel those without it do not understand what it’s like to live with the condition, while 58% don’t tell people about their condition because they worry they would be seen as ‘whinging’. 

The study released as part of a national campaign launching this week, said three in four say that their family and social lives are compromised by the condition and say they find it harder to take part in events with family and friends. Almost two in three say they have missed out on special occasions because of the condition.

The charity's action plan calls on people to go out of their way to have a conversation with someone who has the condition to "better understand what it's like".

They say sufferers should be offered personalised care and support and not a 'one size fits all' approach.

COMMENTARY

Angela Donaldson-Bruce,

Scotland Director of Versus Arthritis

Imagine being a parent who is unable to bend down to pick up your baby when they’re crying. Being a teacher who’s forced to give up the career you love and had passionately pursued. Or a 10-year-old child, suddenly excluded from games in the playground because the pain is too much.

This is the reality faced by 1.5 million people in Scotland living with arthritis.

We rarely stop to think about the series of movements that make up our lives – standing, lifting, hugging, squeezing, throwing, gripping. These movements are the building blocks of our lives, they form the daily rituals many of us take for granted: getting dressed, brushing your teeth, holding a pen, hugging your partner. Arthritis steals our ability to do these movements unburdened and without pain.

It steals people’s independence, ability to work, have relationships and enjoy family life. The things people need to live a quality life and to choose what they want to do with it.

Yet arthritis is rarely acknowledged or spoken about. It’s dismissed as inevitable, as an older person’s disease. It’s clear society doesn’t understand what it’s like to live with arthritis. In part, this is because the condition is invisible and because for some people the pain fluctuates. But that’s no excuse.

Trivialisation of arthritis is unacceptable and it’s creating an epidemic of isolation. People aren’t talking about their experiences. In fact, 58% of people with arthritis in Scotland actually hide their pain because they feel like a burden, like they are whinging. And three quarters (75%) with arthritis in Scotland say they find it harder to take part in events with family and friends – this is compared with 60% in the UK.

Arthritis is one of the biggest health issues affecting the UK, with one in six of us is living with the condition. Yet, we’re failing people with arthritis by not recognising it as serious and. Over half (55%) of people with arthritis in Scotland feel unable to ask for help and 52% say they feel lonely on a regular basis. This isn’t good enough. It’s time to stand up against arthritis.

At Versus Arthritis we are mounting an opposition. This week, we launched our first national campaign that challenges the current lack of public recognition. We’re rallying and empowering people to stand up to arthritis - whether that’s in research, policy, care or fundraising.

We’re calling on every person in the UK to speak up – and to speak up now - whether by asking the person you know or love what it’s like to live with arthritis, or publicly saying you will no longer tolerate arthritis stealing from millions of people.

A Scottish Government spokesman said: “We welcome this new research from Versus Arthritis and are committed to ensuring that everyone living in Scotland with long term conditions, such as arthritis, are able to access the best possible care and support, and benefit from health and social care services that are safe, effective and put people at the centre of their care.

“The Minister for Public Health, Sport and Wellbeing is meeting with the organisation next week in Parliament to discuss how we can work together to improve the lives of people living with arthritis."