Arthritis has changed every aspect of Laura Moses’s life. She can’t carry regular dinner plates because they are too heavy. The pain makes it impossible for her to use a manual can opener. She must take extremely powerful medications to keep the debilitating pain at bay and hopefully slow the progression of the disease. She struggles with depression as she comes to terms with the fact that she will never again be able to do many of the activities she once enjoyed.
Moses isn’t a senior citizen. She is a 30-year-old mother who was diagnosed with rheumatoid arthritis three years ago. For months after her diagnosis, she did not have the strength to pick up her three-year-old daughter and would instead have to get down on the floor to hold her. She often experiences excruciating pain and fatigue that can make getting out of bed difficult.
Moses is one of the tens of thousands of people across the country who are struggling with the chronic pain of arthritis.
More than four million Canadians have some form of the disease. It’s the leading cause of disability and costs the Canadian economy more than $33-billion a year, according to a recent report from the Arthritis Society.
Yet individuals living with arthritis and experts who treat it say the disease is failing to register on the national radar and that too few understand its seriousness or its devastating consequences. They say the prevailing myth – that arthritis is merely the aches and pains of aging – undermines efforts to help patients get the treatment they need soon after diagnosis and to spur research. As a result, this leaves many individuals with arthritis to suffer in silence.
“There is a huge impact from arthritis and I think that’s totally misunderstood or not known by the general population,” said Catherine Backman, a professor and head of occupational science and occupational therapy at the University of British Columbia. “It is the most disabling condition in Canada.”
There are more than 100 different types of arthritis, all of which share some element of joint and musculoskeletal pain, according to the Arthritis Society.
The most common type, osteoarthritis, is a degenerative joint disease that may occur in people who have a previous injury or who have experienced wear and tear on joints. It’s responsible for nearly all knee replacements and the vast majority of hip replacements in Canada, the Arthritis Society says.
Rheumatoid arthritis, an autoimmune disorder in which the body attacks its own joints, can lead to deformity over time if not properly treated. Early detection is crucial because powerful drugs must be started within the first six months to help prevent irreversible joint damage.
Not all people who have arthritis will experience extreme pain. But many will.
John Esdaile, scientific director of the Arthritis Research Centre of Canada, based in Richmond, B.C., says rheumatoid arthritis affects only 1 per cent of adults in Canada, but it is often severe and disabling. Osteoarthritis affects about 10 per cent of adults and while some individuals may not develop severe symptoms, it can be debilitating.
The irony is the very nature of arthritis is what helps to keep it in the shadows.
Arthritis is a silent disease marked by pain that cannot be seen. Individuals with arthritis often look fine and don’t appear “sick,” making them vulnerable to accusations that they are exaggerating the level of pain they feel or are simply being lazy if they are unable to work or do household chores, according to patient advocates and experts who study the disease.
“I think people just think they should suck it up,” says Janet Yale, president and chief executive officer of the Arthritis Society. “It is a disease. It’s not seen as that.”
“Pain and fatigue are invisible. You can’t see them,” Backman says. “I do hear people with arthritis describing some situations where [others] are a bit doubtful or dismissive of their illness when they ask for assistance or say they’re unable to work.”
Moses says she has struggled to get friends to understand that she is often in high levels of pain and may be too tired to get out of bed. She eventually told her friends that she was on chemotherapy, which seemed to deliver the message. Many drugs used to treat rheumatoid arthritis are also used to treat some forms of cancer.
“When you say cancer, people know you mean business. They know this is a real disease and something people can struggle with,” Moses said. “I wish that people, when they hear arthritis, would realize it can do the same thing and that it’s not just one of those ones you can just brush aside.”
The pendulum can also swing in the other direction. Many people with arthritis fear telling their employers, worried that they will be seen as unproductive or a liability, Esdaile says.
The Arthritis Society recently released a survey of 1,057 people with arthritis. Thirty-three per cent of respondents said they had to stop working because of their condition. Seventy per cent reported feeling anxiety over their continued ability to handle the responsibilities of work. Fewer than half of those involved in the survey told their employer about their condition.
Esdaile and other arthritis experts believe that many employers would be willing to help individuals with arthritis, particularly if they knew that many interventions can be cost-effective. But the key is getting individuals the treatment they need as early as possible in order to help control the progression of the disease.
It can be a vicious cycle: Individuals with arthritis fear speaking up because they worry about possible negative consequences, but this also means that ignorance about the true nature of the disease remains the status quo.
Despite this, Esdaile believes that the future will bring many changes to the way arthritis is seen and treated. “I really think this is doable,” he said. “It’s finally getting on the agenda.”