A Behind-the-Scenes Look at Life with Arthritis

Over 6 million Canadians live with different types of arthritis, and it’s expected that, by 2040, 12 million will have osteoarthritis, which is now one of the fastest-growing conditions in the world. Arthritis affects all aspects of a person’s life: work, school, parenting, exercise, social life, as well as the ability to be spontaneous and complete basic, daily tasks.

However, if you don’t have arthritis, you might not see or understand it. Arthritis is often dubbed an “invisible disease” because the pain, extreme fatigue, and other symptoms aren’t always visible to others. This makes life hard for people who have arthritis because they constantly need to explain or justify the way they live or the decisions they make.

To create awareness about the challenges that people with arthritis face every day, members of Arthritis Research Canada’s Arthritis Patient Advisory Board share some of their experiences below.

Arthritis at Work, Home and Out in the World

Arthritis is the most common health reason why Canadians stop working. One in five living with rheumatoid arthritis leaves the workforce within five years of receiving a diagnosis. Almost half of working-age Canadians with osteoarthritis report not working or attending school.

Arthritis is also most often diagnosed between the ages of 30 and 45 when people are in the prime of their working lives.

Steve was diagnosed with rheumatoid arthritis at age 26 while completing his master’s degree. “It definitely changes how I work,” he said. “When my hands are not sore and I have movement and periods of less fatigue, I get a lot of work done in short periods in order to rest and practice self-care.”

Nikki, who also lives with rheumatoid arthritis, but was diagnosed at age 19, said, “It’s hard to work because I’m so fatigued. Some days, I forget common tasks due to brain fog.”

Arthritis Research Canada’s scientists have developed a one-of-a-kind online program called Making it Work™, which focuses on early intervention to prevent work disability and foster healthy, productive work lives.

Arthritis is unpredictable. In addition to work, symptoms also affect a person’s social life.

“Each day is extremely uncertain,” Nikki said. “If friends make plans to go for a hike, I don’t know if I can go until hours before…I sometimes don’t get invited to events because of that.”

Alison, who lives with rheumatoid arthritis, said planning is key to navigating life with arthritis. “I have to plan my day, week, month around it,” she said. “I have to keep on top of medications, appointments, exercise, and a healthy diet – weaving them into my work and home life. I can’t take a day off from arthritis.”

Some arthritis medications can suppress the immune system, making it easier to contract illness. As a result, many people with arthritis need to be cautious in social situations. Sandra, for example, lives with axial spondylarthritis – which affects joints in the chest, spine and pelvis – and is on two immunosuppressant injectables and oral prednisone.

“I must be very careful about avoiding infections at home and out in the community,” she said.

Arthritis and Extreme Exhaustion

More than 80 per cent of people with inflammatory arthritis report experiencing extreme fatigue that disrupts their lives. It is a form of exhaustion that nothing helps – not even taking a nap, shower, drinking coffee or getting a good night’s sleep. People with arthritis often say the pain is easier to manage than the fatigue.

As inflammation increases during a flare or before the right medication is identified, levels of fatigue rise. Loss of muscle mass can also be a contributing factor. Many people with rheumatoid arthritis have other illnesses – like anemia, hypothyroidism and cardiovascular disease – which can impact energy levels. Medications used to treat rheumatoid arthritis, like methotrexate, are also notorious for causing fatigue.                               

Alison describes the fatigue as a heavy, dark curtain that lowers itself over her – too heavy to lift. “I have to give in completely and rest until it is removed,” she said.

In addition to fatigue, at least 70 per cent of people with arthritis experience insomnia. They struggle to fall asleep, stay asleep or wake early. But lack of sleep is about more than being tired when you have arthritis. It can worsen pain and fatigue and even amplify mental health problems.

Sleep experts recommend cognitive behavioural therapy for insomnia (CBTi), which involves learning new strategies and behaviours to promote sleep rather than medications. However, CBTi is not widely available in Canada. At Arthritis Research Canada, our scientists are working to change this through a research project that is tailoring and testing a CBTi program for people with arthritis that is delivered online.

What People with Arthritis Want You to Know

Arthritis is about so much more than joint pain. It causes many other symptoms, complications and is life-changing.

“My disease impacts my entire body, including my organs,” Nikki said. “My immune system battles itself, causing inflammation and pain. There is no cure, but with medications and lifestyle changes, I can manage my disease.”

Steve wants people to understand that arthritis can happen at any age. Since he is a young person living with arthritis, he finds people don’t understand or listen to him.

“I show them my damaged joints because my arthritis is super visible and it sometimes takes seeing for people to believe me,” he said. “I then explain that while there are visual parts to my arthritis, sometimes it’s the invisible parts that are more difficult to deal with.”

“Even though I look well when I show up to an event or activity, you didn’t see that I did nothing the day before just so I could be there or that I may need to take a 6-hour nap after to recover,” Sandra said. “When I tell myself, ‘Do more, maybe it’s all in your head,” I end up in a flare.”

Due to misconceptions about arthritis, people living with different types of the disease are stuck in a constant cycle of explaining themselves to others.

The next time you meet someone and they tell you that they have arthritis, ask questions and then help to create awareness about this serious, misunderstood disease.