Rheumatoid arthritis awareness week launched in the UK

Action on rheumatoid arthritis ‘urgent’ as new data suggest thousands affected constantly experience abuse, stigma and discrimination

A national rheumatoid arthritis (RA) campaign was launched on Monday. We R.A. Priority gives a voice to the hundreds of thousands of adults of all ages with this often-invisible disease and challenges the potentially damaging misperceptions that persist around the condition.

Findings from new research reinforce the reality of RA in the UK today, with data suggesting many young adults with the condition regularly labelled as having an ‘old person’s disease’, whilst many continue to face stigma at work and among friends and family. The We R.A. Priority campaign aims to empower those with RA to address perceptions and show how, when RA is treated as a priority, the impact can be life changing, for the individual and for society. 

Over 400,000 people across the UK live with RA – an incurable, systemic auto-immune condition that can cause intense pain and fatigue to those affected and, if not treated appropriately, can cause irreversible damage to joints and disability. The campaign is calling for urgent change to put a stop to the misperceptions of RA and continued social and economic impact, specifically: 

RA needs a unique identity:

differentiated from other arthritic conditions which are not caused by auto-immune dysfunction

Recognition that many symptoms of RA are invisible and debilitating:

so that key audiences such as healthcare professionals, government, employers, venues, transport providers, shops, can take simple steps to better support those affected

Clare Jacklin, Chief Executive at the National Rheumatoid Arthritis Society (NRAS) said: “Over 400,000 people across the UK live with rheumatoid arthritis (RA); yet, in 2020, misunderstanding around the condition is still alarmingly high and is causing deep distress for individuals as well as a major fiscal and social cost to society.

"These are people with incredible potential and to still be in the situation where people are shouted at in the street for using disabled parking spaces because they don’t ‘look’ like they should or they lose their job or overlooked for career progression because of their RA, is simply unacceptable.

"Today the community is calling for urgent action. By taking just simple steps to change attitudes, we can change thousands of lives. Without this, the community could face more challenges as COVID-19 ‘recovery’ plans establishes other, more recognised conditions as ‘more important’. We must act now. The reality is that those affected by RA are capable, and often inspirational people with so much to offer, as long as RA is a priority.”

Data collected as part of the campaign captures feedback from over 280 people living with RA – insights include:

"These are people with incredible potential and to still be in the situation where people are shouted at in the street for using disabled parking spaces because they don’t ‘look’ like they should or they lose their job or overlooked for career progression because of their RA, is simply unacceptable. 

"Today the community is calling for urgent action. By taking just simple steps to change attitudes, we can change thousands of lives. Without this, the community could face more challenges as COVID-19 ‘recovery’ plans establishes other, more recognised conditions as ‘more important’. We must act now. The reality is that those affected by RA are capable, and often inspirational people with so much to offer, as long as RA is a priority.”

Data collected as part of the campaign captures feedback from over 280 people living with RA – insights include:

• 93% of people noted that the general public fail to differentiate RA from other forms of arthritis, labelling it an ‘older person’s’ disease - this is despite more than half of all respondents (52%) being diagnosed under the age of 45

• 85% of people have experienced direct stigma as a result of RA being invisible – ranging from accusations of cheating the state benefit system to being called lazy

• 69% of people have experienced negative attitudes when using disabled facilities as a result of their invisible symptoms – with some even receiving verbal abuse

• Almost half of people (47%) admitted to not feeling confident to talk to their close friends and family about their condition

• One in ten people have lost a job or promotion as a result of their disease:

• Previous research has shown that 60% of people with RA stop working more than 5 years earlier than they would have expected to if they had not been diagnosed with RA

• More than half of respondents have lied or actively hidden their condition from friends and family, while 80% have pretended to be well enough to socialise in fear of damaging relationships or losing friendships.