JointHealth™ express   September 28, 2016

Roughly 1 in 5 Canadians live with arthritis. Where is our social movement?

People with arthritis need to take action. Together, we need to pull our disease out of the closet and start talking about it.

At a recent dinner party, a good friend of mine said something revealing to me: “I don’t think of you as disabled.” My friend’s comment was meant as a compliment but also reflected the still common misperception of arthritis pain as a “condition” associated with getting old and that can’t really be treated. It also reminded me how people with arthritis are often embarrassed about it and live in silence. This in spite of the fact that arthritis affects more than 4.6 million Canadians, is a debilitating disease and the leading cause of work disability in Canada and limits the activities of nearly 20% of Canadians.

I have had rheumatoid arthritis for 27 years and while I have learned to live it, my life is a far cry from what it once was and what I wanted it to be. In my work, I try to build “pride” in everything ACE does. Still for reasons we have no “movement” but not because we’re not proud.

Often the disability you live with is invisible and isolating, making it difficult for a community to come together. Also, disabilities like arthritis rarely get the “headlines” that cancer and other high profile, celebrity-backed diseases get. Good for them, bad for us.

People with arthritis need to take action. Together, we need to pull our disease out of the closet and start talking about it. Not just during Arthritis Awareness Month in Canada but every day of the year.

Today, one in five Canadians is living with arthritis. Nearly two-thirds of Canadians with arthritis are under the age of 65. By 2040, the number of Canadians with arthritis will increase to one in four.

The need to confront the stigma of arthritis and consumer silence is nowhere more evident than in the workplace. A recent evaluation of the economic burden of illnesses by Statistics Canada estimated the annual cost of workplace disability from arthritis and MSK conditions at $13.6 billion.

Similar to the mental health community, Canadian workers with arthritis find it difficult – and for some, impossible – to disclose their diagnosis to their employers. While instituting workplace policy changes and practices that support flexible work arrangements is important, we must not overlook the real need for culture change in the workplace. Management experts widely agree that instituting new policies in the workplace are rarely successful without culture change – that is to say– without changing the way people think and act, the structural changes an organization may make are not likely to succeed.

There is a stigma attached to arthritis that discourages employees with it from disclosing their disease to colleagues and employers. Many employees are worried that disclosure could have negative consequences, like loss of career opportunities or perhaps termination of employment. A 2016 public opinion poll by the Arthritis Alliance of Canada shows that almost half of Canadians would be reluctant to disclose to their employers that they are living with a chronic disease because of a fear of repercussions, and that nearly 40% knew someone that had been treated unfairly in the workplace because of a chronic disease.

Collective efforts are needed to change the stigma associated with discussing chronic diseases with employers and change workplace culture. We need only observe the work that the mental health community has undertaken to tackle stigma and raise awareness and promote understanding of mental illness in the workplace to understand that changing culture is an important part of changing behaviour and norms.

Changing workplace policies won’t be enough to achieve more flexible and accommodating workplaces; we must change workplace cultures and attitude if we want real change to happen.

Let’s start a movement.

Cheryl Koehn
Person with rheumatoid arthritis and President of Arthritis Consumer Experts