Helen E. has had rheumatoid arthritis for 38 years. She talks about the challenges of raising a family and the value of a good support system.

Helen E. (not her real name), from Ontario, Canada, was diagnosed with rheumatoid arthritis 38 years ago. “It started with a horrible aching in my wrist; I thought I had twisted it,” Helen says. For the next two years, mostly in the morning, she experienced pain throughout her body, coming and going in different joints. One day while shopping, she felt a sharp pain in her hip and collapsed. She was taken to the hospital, where she remained for a week.

Diagnosed by an internist and later by a rheumatologist, Helen had to undergo physical exams, blood work, and an X-ray — the same process that is used today, with the addition of MRI and ultrasound used to measure the stage of the rheumatoid arthritis.

Helen has found life challenging — physically, mentally, emotionally, and financially. So how does she cope? “My attitude is a big part of it," explains Helen, "and I have a supportive family, and a caring rheumatologist."

Here are some of her greatest obstacles.

• Physical, mental, and emotional challenges. “In the early years, as a mother with two children, it was very difficult to manage rheumatoid arthritis. I couldn’t lift my children because of the weakness in my hands. I taught them early on to grab ahold of Mom’s neck so I could support them with my arms to get them out of the crib,” she says. Her thumbs were numb, making it impossible to grip things; consequently, she couldn’t pull her children’s socks up and she used her teeth to pull the tabs off their disposable diapers.

  Housework was and remains difficult for Helen. When her children were very young, they learned to help her around the house. This was difficult emotionally and mentally for Helen because she felt guilty having her children do so much work when they were so young. “I tell everybody this is not just a physical disease, but a mental and emotional one too,” she says. At times, throughout her 38 years of living with rheumatoid arthritis, Helen has also dealt with some depression.

• Financial challenges. Living with rheumatoid arthritis can be costly. Helen had to replace all the door handles in her home so she would be able to open them. She purchased large-handled pots and pans and other gadgets to help in the kitchen and around the house. Special shoes and inserts are another expense. For her everyday travel, Helen uses a van because it is easier for her to get in and out.

Treating and Living Well With Rheumatoid Arthritis

Today, there are many more treatments for rheumatoid arthritis than there were in the early 1970s. This allows Helen to work with her rheumatologist to manage her rheumatoid arthritis, and the pain associated with it, more effectively.

Adjusting medications and coping with their side effects is challenging, however. Helen is grateful for her rheumatologist. “He knows when I am desperate; he understands and encourages me,” she says. “I don’t let it all get me down; I get up and go! I rest every day, stay active, and know when to quit. I take my medications as prescribed; I do my part.”

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Related: Becoming Active in the Rheumatoid Arthritis Community

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In the 1980s, Helen was a volunteer for the Arthritis Society, heading up fund-raising campaigns and special events. As a leader for their Arthritis Self-Management Program, she educated others on depression, diet, doctor-patient communication, medications, and the importance of rest and exercise. “Hearing the people’s stories and what they have done helped me,” Helen says. She hopes her story helps you, too.