I run a support group for people who live with chronic pain. Almost everyone who attends has the same complaint: Other people don’t understand what it’s like to be in pain day in and day out. People’s perception of what a person in pain is supposed to look like is one of the major hurdles preventing understanding. While a few of our members use canes, most of us look healthy. Many of us have had friends tell us we look “great” on a day when we could barely crawl out of bed. Perhaps if they looked deep into our eyes, they would spot the pain. But we don’t limp; our medications—and there are plenty of them—don’t cause us to lose our hair; we don’t have a big, red “P” for pain in the middle of our foreheads (though some of us think that might be a good idea).
The problem of perception carries into the doctor’s office, into the workplace, and into the family. Some of our members don’t wear makeup, don’t dress up, and don’t smile when meeting with their doctors for fear their pain won’t be taken seriously. Others are considered lazy because they can no longer work. Still others have family members who accuse them of pretending to have “fake illnesses” as a means of avoiding family duties.
And many of us have to deal with the approbation of strangers who see us—seemingly healthy people—park in handicapped spots. Strangers have several times accosted my cousin, who looks healthy and full of energy, after she has parked in a spot reserved for the handicapped. Despite her wheelchair-adorned license plate, they have questioned her right to park there. They don’t see a woman who has rheumatoid arthritis so severe that even the chemotherapy drug her doctor prescribed hasn’t stopped its progress, who has had half her stomach and intestines removed because of damage done by aspirin and other pain killers, who has had to cancel airplane tickets and put off trips because she was in too much pain to endure a long plane ride.
One of our group members, a young man with no obvious health problems, can stand for only 15 minutes at a time without excruciating pain. That is enough time to walk a short distance—perhaps as far as a nearby restaurant where someone watching him might never guess his condition. Using a handicapped spot allows him to make it to the restaurant, where he can sit and enjoy himself.
One of the most difficult things I have ever done was to get a handicapped plate for my car. I had no problems with the process itself, which was easy enough once I received a diagnosis from my doctor. Acknowledging that I had a permanent disability and that I needed special help, however, was almost more than I could bear.
Now I’m glad I did. The plate has allowed me to live a better life. Like most of those with such plates, I use the service only on bad days when a longer walk would cause pain.
My favorite bumper sticker reads: Pain is inevitable, misery is optional. Although many of our group members live with considerable pain, they strive to live as fully as their condition allows. Handicapped plates help them to do that.
We appreciate those able-bodied drivers who respect the law and leave handicapped spots for those of us who need them. And we know that passersby mean well when they criticize seemingly healthy people with handicapped plates.
But remember, looks can be deceiving. Please reserve your indignation for those able-bodied drivers without handicapped plates who park thoughtlessly in spots reserved for those of us with disabilities. If you see us having a good time, be happy for us. And be forever grateful that you don’t have to use a handicapped spot yourself.
By Susan Gold. This article is in response to an editorial printed in the Portland Press Herald on parking spots for those with disabilities. Susan Gold is the founder of the Chronic Pain Support Group and past member of the Members Advisory Committee of the American Chronic Pain Association.