by Jackson Rainer, PhD
Stigma. What an ugly word. The very sound of it reflects its hateful meaning. Stigma is an unfavorable assessment of a person that is based on a particular attribute, usually one that marks the person as different from others. This article discusses stigma as the negative perception or judgment someone without arthritis might have about someone with arthritis.
Stigma has its roots in stereotypes and in cultural ideas of what is “normal.” When faced with someone or something different from that norm, people may become alarmed and challenged instead of curious and empathetic. They may feel a sense of repulsion and may reject the person whom they perceive as different. Rejection may take the form of acts of discrimination, such as deliberately barring the stigmatized person from a group or activity, or it may take subtler forms, such as insensitive comments. Whatever form stigma takes, it typically arises from misperceptions, fears, biases, and attitudes arising from that sense of difference.
To the person with the stigmatized attribute, stigma can certainly be distressing and even damaging. People who experience acts of stigma often feel abnormal, ashamed, and excluded. Janet, who has rheumatoid arthritis and lives in an assisted living facility, described her experience with stigma. “My arthritis has now advanced to the point that the joints in my hands are deformed. I have difficulty using utensils at meals and have to pick up a glass with both hands. I’ve often been embarrassed, but most of my friends know to help me. Not long ago, a resident’s teenage granddaughter came to visit. I was within hearing distance when she said, ‘Where’s the lobster lady? You know, the one with claws.’ I felt my face flush with humiliation and shame. I know I should have been able to rise above the girl’s immaturity, but I was emotionally cut to the quick.” Janet wound up retreating to her apartment in tears.
As Janet’s experience shows, stigma can take away your dignity and affect your involvement in society. Originally a Greek word, stigma came to mean a cut or burn mark on the body indicating that a person’s morality was abnormal or corrupt. It showed that the person was a criminal, slave, or traitor who should be avoided. Today, the word refers to a mark (which may or may not be visible) that allows people within a group to identify “outsiders.” This mark permits the group to define who belongs in the group and who does not — in other words, who is “normal” and who is not. Stigma is punishing because it implies that being different from the group is something to be ashamed of.
Social scientists classify stigma into a few basic types. One type has to do with “tribal stigma” that a culture may attach to minority religions or ethnic groups. Another has to do with behavioral attributes, such as mental illness, drug or alcohol addiction, or criminal behavior. A third type is based on physical differences, such as scars, deformities, or other visible signs of illness. Stigma related to arthritis or physical disability falls within the latter category.
It is a natural tendency to define ourselves by how we are different from others and label those differences in a variety of ways. You probably tend to make distinctions about yourself, saying things like, “There aren’t many of us redheads in the world,” “I’m taller than most folks,” or “I’m an Episcopalian.” Stigma comes into play when prevailing cultural beliefs tie people labeled as different to something negative, in effect saying, “There’s something wrong with him because he is a redhead [or tall, or an Episcopalian].”
Some people place these labeled individuals into groups that they consider less worthy than their own group, which draws a nasty line between “us” and “them.” Rather than simply being different, the stigmatized group is defined as abhorrent. If the stigma sticks to this group, people who are a part of it may experience discrimination and a loss of status. They may also be placed in unfair circumstances in relation to others.
Marie, who has arthritis and uses a power chair to get around, related an incident in which she encountered this us-versus-them mentality. One evening, she attended a social event in her rural community. As Marie’s home health aide was helping her move from her car to her chair, another guest strolled by and commented to the aide, “Seems like she would be better off using a walker to get inside. Does she have to use that chair?” Marie was nonplussed. “She talked to my aide like I wasn’t even there. I guess I was invisible to her. Here I sat, gussied up and dressed to the nines, and I felt so very pretty. What the other guest said took the wind out of my sails. I didn’t even want to go inside, and it had been a party I had been looking forward to for weeks.” Stigma left Marie wanting to hide. She felt discredited, depersonalized, and thoroughly bad.
Reflecting on the experience, Marie said, “I felt like a caricature of someone sick. Arthritis is hard enough to live with and treat without having others dismiss me. It isn’t like I asked for arthritis. I’ve taken as good care of my health as I could. I thought I had dealt with the loss of self-esteem that came with my diagnosis, but I guess not.”
Stigma “cuts people down to size” based on social stereotypes. It is an unwarranted and unwelcome emotional shove out from the center of a group into its margins. Having your differences negatively labeled by others can cause a significant change in your perception of yourself, particularly if you have health problems. As Jim, a man with osteoarthritis (OA), explained, “I know I have been stigmatized when I feel transformed from a whole person into a tainted one. I can recognize someone’s sense of contempt — that because I am different, I am worth less than they are. It can happen anywhere — at work, school, the doctor’s office, or even within my own family.”
Stigma can profoundly affect the behavior of people who are stigmatized. A woman named Emma described her experience. “I began to act in ways that those people who felt sorry for me expected. I found that I started to behave in a ‘sick’ way. I began to complain, feel more dependent than necessary, and doubt my own ability to take care of myself in my day-to-day activities. That’s just not how I know myself. It’s funny though, as I look back. Their reactions to my arthritis began to shape my emotions and beliefs. I didn’t want to believe that my self-esteem was compromised, but that is what certainly happened.”
If you have physical limitations because of your health, you may feel less able to function and therefore less competent in others’ eyes. But having arthritis means making accommodations, accepting help from others, and allowing more time to perform day-to-day activities. None of these changes are bad or demonstrate weakness; they are merely facts of life with arthritis. When you feel that others are stigmatizing you, you may view the adaptations that arthritis requires as bad or wrong. This may create self-doubt, shame, and a sense of being out of control, even though the purpose of making the changes is to help you manage your life.
Even using assistance for a basic necessity such as mobility may appear in a negative light. John, who uses a walker, knows this well. He took some time to get used to the idea that he even needed a walker. “My treatment team and caregivers had to talk me into it. Physical and occupational therapies were prescribed to teach me how to use it, and I got pretty good at maneuvering around. I thought I was doing well until an acquaintance from church came up to me one morning and said, laughing, ‘Hey, cripple! You sure you know how to drive that thing or does it drive you?’ While I realize he may have been trying to make a joke (poor and ill-timed as it was), it came across as, ‘Better you than me.’”
It may not seem like it at times, but American society has come a long way toward being more accepting of people with disabilities. As baby boomers age, the world becomes more and more user-friendly. In addition, there have been governmental efforts to end discrimination. The Americans with Disabilities Act of 1990 made it illegal to discriminate against a person with a disability when it comes to employment, transportation, and other aspects of life. It defines a disability as having a physical or mental impairment that significantly limits at least one major life activity. Although the law makes discrimination illegal, regrettably, it is not possible to outlaw stigma.
Instead, stigma needs to be challenged by individuals in their everyday interactions. To face stigma, it’s vital to confront it head-on and look at your own feelings of being stigmatized. Educating others about the nature, course, and process of arthritis can help to neutralize the alarm and threat they may feel. The better people understand arthritis, the more they accept it. Accurate information encourages people to be inclusive and helps them think carefully before acting.
Janet took this notion to heart in dealing with the cruel comments about her hands. “After I cried and soothed my hurt feelings, I went to my neighbor and told her what I heard and asked to meet her granddaughter. As embarrassed as my neighbor was, she arranged a meeting. I educated the child. I told her that a lobster’s claws were natural utensils, used to gather things needed in their environment. Arthritis, though, was limiting me from moving the joints in my hands and fingers. I showed her my hands, explained the inflammation and stiffness, and asked her if she had any questions. The young girl looked at me like I was crazy but mumbled an apology and never called me ‘lobster lady’ again.”
If you are concerned about the effects of stigma, become active in your community and help raise awareness about arthritis. There is no inherent shame in having different needs because of arthritis. In some places it is completely accepted — for example, people who live in assisted living communities understand the nature of arthritis because many people there have the condition. Therefore, living with arthritis becomes a norm of the community, and stigma is less likely to occur. The goal is to help the broader community — where comparatively few people have arthritis — become as inclusive as these smaller communities.
Stigma arises from ignorance, prejudice, and discrimination. If you proclaim and actively live with your difference, even when challenged, you may find that you can neutralize potentially stigmatizing events. Keep in mind, however, that challenging someone’s ignorance comes with some degree of risk and could potentially lead to conflict.
Fortunately, there are effective ways to diffuse such confrontations — with humor, for example. Derek, a man with OA who uses a handicapped parking sticker on the recommendation of his doctor, often gets nasty comments from people who see him using it because to them, he doesn’t look disabled. He explained how he now eases tension in uncomfortable parking lot situations. “Some folks look at me, driving into that blue outline in the parking lot, and I can see their disdain and contempt. I don’t know whether they think I don’t deserve the space or I should be pitied because I need the space. When asked or when I see ‘the look,’ I just laugh and say, ‘Arthritis. Can’t walk as far as you. I can see you’re jealous because I have a closer parking space to the door, but don’t be. It’s really not worth it.’”
Society has a long way to travel to overcome the many misconceptions that lead to stigmatizing others. Stigma remains a real problem for people who have any kind of difference. When stereotypes translate into discriminatory behavior, we are at our collective worst. Strategies for changing beliefs demand our attention and compassion. As Derek concluded, “I’m as normal as anyone — just different.”
Last Reviewed April 15, 2015
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