Five years' worth of quality life stolen

Teri, who has arthritis, holding out her hand to defy arthritis

Each of the 10 million people with arthritis in the UK will lose, on average, five years’ worth of quality life across their lifetime, according to research from a new charity, Versus Arthritis.

The Defying Arthritis at Every Age report lays bare for the first time the personal impact of the condition on all parts of life – the ability to work, spend time with loved ones and do the simplest of movements without pain. The burden of arthritis on those with it is quantified using the metric Quality Adjusted Life Years (QALYs) lost, as well as research among those who live with the condition.

While everyone’s experience is different, half of people with arthritis are in pain every day. As such, the condition is contributing to an overall reduction in life quality for millions of people and is causing many to become isolated.

The report, part of a national campaign launching this week, reveals that half (50%) of people with arthritis feel those without it do not understand what it’s like to live with the condition, while two thirds (66%) don’t tell people about their condition because they worry they would be seen as ‘whinging’.

As a result, over half (55%) feel unable to ask for help and two in five (41%) say they feel lonely on a regular basis, with the number rising to nearly three quarters (73%) for younger people (16-34-year olds).

Other key findings from the report include:

  • Independence: Almost half (44%) of people with arthritis have difficulty getting around independently and over a third (39%) actively avoid going out on their own.

  • Work: Over a third (38%) had to give up work because of their condition and the same number had to reduce their working hours. A third (33%) have had to reconsider the career they wanted to pursue.

  • Family life: Three quarters of people affected (76%) say that their family and social lives are compromised by the condition. 60% say they find it harder to take part in events with family and friends, while almost half (47%) say they have missed out on special occasions.

  • Relationships: Almost half (43%) worry about being physically intimate as a result of their arthritis, while close to a third (31%) say their friendships or relationships are left strained because of it.

  • Social life: More than half of people (52%) say their condition causes them to cancel plans. As many (47%) say they avoid making plans altogether due to the fluctuating nature of their pain. This increases to as many as three quarters (73%) of young people aged 16- 35.

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.

In response, new charity Versus Arthritis has unveiled an Action Plan, which sets out the changes urgently needed across all areas of society to increase public awareness and understanding and help people with the condition live better. The plan, the first of its kind, calls for action across five priority areas:

  1. In conversation: The report identifies the critical role of conversations in making the condition more visible and changing the status quo. A third (33%) of people with arthritis say talking about their condition reduces their anxiety around daily activities. Yet almost half (43%) admit they’ve hidden their pain from a friend, family member or colleague. The charity is calling on everyone to publicly declare themselves Versus Arthritis: either publicly on social media or privately by having a conversation with someone who has the condition to better understand what it’s like.

  2. In healthcare: Treating and caring for people with arthritis must be seen as a serious health priority. People should be offered personalised care and support; one size does not fit all.

  3. In research: The investment and participation levels in research into arthritis and related conditions need to reflect the scale of their impact on society.

  4. In support: People with arthritis need to have access to quality information and the means to self-manage. This will help people live well with the condition, as well as help reduce the ongoing burden on the social and healthcare systems.

  5. In public spaces: The environments we live in – our homes, work places and public spaces – must be designed inclusively, so that people living with arthritis are not disconnected from society and the day-to-day activities we all take for granted.

Liam O’Toole, CEO of Versus Arthritis, said:

“Arthritis steals from millions of people every day. It takes away their independence, ability to work, family life; the things most of us take for granted. Yet it goes unnoticed or is dismissed as an old person’s disease, or “just a bit of pain”. This trivialisation is unacceptable and it’s creating an epidemic of isolation where people with arthritis don’t feel they can speak up about its impact. As a society we mustn’t tolerate this any longer.

“Today we are calling on everyone to push back against arthritis and join a national conversation to make this invisible condition visible. We want more people talking about arthritis more frequently and more loudly, so it is no longer ignored, and no one has to live with it alone.”

Anoushka, living with rheumatoid arthritis, said: 

“I’m 30 but I have to rely on my family and friends to do even the simplest of tasks like hold my hair dryer up for me or open doors. My friends are amazing, but I feel like a burden and I wish I didn't need help with such basic things.  When I’m out with my crutches, people often ask what’s wrong with me, but they don’t believe my reply. They say I’m too young to have arthritis and, because people can’t see it, they don’t think it’s real. But it’s not just an old people’s disease.”

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.”

Paul O’Grady, broadcaster, said:

“Having spent time with a remarkable girl called Amelie who lives with juvenile idiopathic arthritis, I have seen the heart-breaking, life-limiting impact of this condition. But it doesn’t have to be this way. Just like society has started to change the status quo around mental health, it’s time for us to take on arthritis.”

National Union of Students said:

“It’s very concerning that the significant majority of young people with arthritis feel isolated and unable to talk about their condition with friends and family. Society needs to stop dismissing arthritis as an old person’s disease, and start acknowledging the huge impact it has on young people’s physical and mental health. Only then will we be able to create an environment where all students can thrive.”

Defying Arthritis at Every Age report