It is difficult for nonsufferers to imagine the degree to which a chronic and debilitating condition like arthritis can turn everyday activities into sources of embarrassment, shame, and even inadequacy. For people living with the challenge everyday, there is some comfort in hearing how others experience and cope with chronic pain.
Starting your day
Many patients begin their day with the thought, "I can't get out of bed."
"A typical day for me," says Debra Fisher, 52, of Pittsburgh, "is I get up in the morning and eventually sit on the edge of the bed. I have to sit there for a minute because my feet are so swollen, and that's just from being in bed. Then I just have to stand there for a minute and get my bearings. My hands are really puffy and my joints really ache, like a toothache. And then I just start moving."
"The hardest thing to me was getting into the car," says Glenn, 54, from Chappaqua, N.Y.
"I used to go out five minutes before my wife and daughter because I didn't want them to see me psych myself up for the pain of swinging my legs into the car. It would take five minutes! Some mornings I just said to myself, 'I don't want to do this.' I dreaded it, it hurt so damn much."
For some, it can be the little things that become huge obstacles. For Joanne, 72, of Cape Cod, Mass., it's opening jars and bottles. "Sometimes I leave them out for my cleaning lady or somebody like that to open." If sitting was hard, sometimes Roberts would simply work standing up. "There was a ledge in my office that I could use instead of sitting at a desk."
There is no right way to handle pain
Sharon Kolasinski, MD, interim director of the division of rheumatology at the University of Pennsylvania, talks to arthritis patients every day, and sees that each patient perceives pain differently. Factors that shape pain perception include the following.
- Severity of the arthritis
- Attitude toward having a chronic disease
- General coping skills
- Pain coping skills
- Family history of arthritis
"It has something to do with how much arthritis you have, but is also has a lot to do with the coping skills that you have," says Dr. Kolasinski.
The things you can't do hurt too
"The illness has affected me psychologically in the winter," says Charles, 66, of Grantham N.H. "If I had my druthers, I'd be in New Hampshire in the winter. I love it up there. But the problem is, I don't have the balance or the confidence on slippery surfaces that I used to have."
Adds Glenn: "Your life starts shrinking. Your world gets smaller and smaller. It was hard to walk the dog and I felt sorry for the dog because I had to leave him behind."
Attitude can make all the difference
Joanne has found new ways to engage in the world. "I don't knit anymore, and I don't play tennis anymore. But then you have to find other things that you're going to replace them with. So I was just out decorating the town with the Garden Club for Thanksgiving and the holidays. It probably wasn't great for my wrist to be cutting all these greens, but it was fun."
Adds Glenn, "If you are vigorous and you are determined and you are optimistic and full of life, it does make it easier to get through these things."