The Stigma Surrounding Chronic Illness
Southern New Hampshire University
The term stigma was defined by Erving Goffman in his 1963 book Stigma: Notes on the Management of Spoiled Identity, as “an attribute that is deeply discrediting.” Goffman also said that a stigma, based on a language of relationships, not attributes, is “really a special kind of relationship between an attribute and a stereotype” (1963, p.4).
The current stigma surrounding chronic illness, both mental and physical, has reached epic proportions. I know this because I live with several chronic illnesses, both mental and physical, and I deal with these stigmas on a daily basis. People with chronic illness are labeled as lazy, indifferent, malingerers, or just plain stupid. Those of us who are Christians are accused of not having enough faith, not praying the right prayers, or not claiming our healings. We who suffer with invisible chronic illness are accused of parking illegally in handicapped parking spaces. Sometimes people leave nasty notes on our windshields, or give us curious (and sometimes just plain dirty) looks when we use assistive mobility devices. These are examples of what Goffman was referring to when he talked about the fact that “normals” treat the stigmatized as though they are not quite human, and exercising a variety of discriminations through which [we] effectively, if unthinkingly, reduce his life chances (1963, p. 5). We construct a stigma-theory, an ideology to explain his inferiority…(1963, p. 6). It is pretty significant that Goffman thinks that this treatment of the stigmatized reduces their life chances. Bruce Link and Jo Phelan express a concurring view in their 2001 article “Conceptualizing Stigma,” in which they state, “…because stigmatizing processes can affect multiple domains of people's lives, stigmatization probably has a dramatic bearing on the distribution of life chances in such areas as earnings, housing, criminal involvement, health, and life itself.” This treatment of the chronically ill dramatically impacts every aspect of their lives in many ways.
“In 2008, an estimated 63 percent of deaths were attributable to chronic illnesses. This number is expected to grow by 15 percent by 2020. Where morbidity rates are available, statistics suggest that over 50 percent of adults are living with at least one chronic illness, 25 percent of whom report significant limitations in their daily activities due to their illness” (Earnshaw & Quinn, 2011). It is apparent from these numbers that an enormous number of people are impacted by chronic illness, and therefore by the stigmatization of chronic illness, on a daily basis. Chronic illness does not discriminate in whom it attacks. Rich and poor, young and old, men and women – all can be affected by chronic illness.
Cultural Beliefs and Biases
People with chronic illness are often viewed as lazy or just uncaring about their health and wellbeing. They are sometimes seen as too stupid to want to do anything about their situation. “People with conditions like fibromyalgia and chronic fatigue syndrome bear an extra burden. We are not believed. Family, friends and even medical professionals don’t believe we are as sick as we say. We often hear: Everybody has aches and pains. You are depressed. You just need to pull yourself together, stop being lazy and push through it” (Sue, 2015). It is attitudes like this that contribute so dramatically to the stigma surrounding chronic illness. When others speak to those with chronic illness in such a manner it is demeaning. It negatively impacts their self-esteem and their interpersonal relationships, subsequently decreasing their quality of life.
There are those who don’t “believe” in some of these illnesses. Some people, even some health care professionals, still don’t believe that Fibromyalgia is a genuine illness despite conclusive scientific proof to the contrary. Others think that recovering from some mental illnesses is simply a matter of positive thinking, getting more exercise, or being better organized. This kind of thinking adds to the stigma, as though people can just “think themselves better,” and if they don’t then they must be choosing to be ill.
A role is defined as “the set of behaviors expected of someone because of his or her status” (Ferris, 2016, p. 113). Role strain occurs when there are contradictory expectations within one role (Ferris, 2016, p. 113), such as when a mother must care for a sick child and also has to cook dinner for her other children. Role strain differs somewhat from role conflict, which is “experienced when we occupy two or more roles with contradictory expectations” (Ferris, 2016, p. 113). Role conflict would occur, for example, if a mother were also a student and she had an assignment due but also had to attend a child’s parent/teacher conference the same evening.
An individual with chronic illness may be a mother, with all the accompanying responsibilities of motherhood such as caring for children, providing a home, home schooling, and earning a living. “…managing our illnesses are our jobs, and they are full time. Scheduling doctors’ appointments, filling prescriptions, cooking healthy food, and managing lifestyle changes are all things that are tiring and difficult. Yes, we can live fulfilling lives by having a positive attitude while we deal with these things, but they do change every aspect of how we live” (Shelley, September 25, 2017). Living with a chronic illness is, in and of itself, a full-time job. Add to that the 24/7 job of motherhood, and you have a recipe for overload and exhaustion. This is a classic example of role conflict. And being a single mother is an added burden. There are over 10 million single mother households in the United States today. In 2011, married mothers earned a median family income of $80,000, almost four times more than families led by a single mom (Johnson, October 6, 2017). This means that a single mom has to work four times as hard as a married mom just to put food on the table. While the role of mother is unquestionably a positive one, having a chronic illness also makes it a strained one.
An individual with chronic illness may have a few or many friends who depend on her for support and encouragement. Being an individual with chronic illness puts an undeniable strain on friendships. Making definite plans is almost always impossible, because you never know how you’re going to feel on any given day. Then when you do commit to an activity, there’s always the very real chance that you will have to cancel, disappointing your friends once again. Fulfilling one’s role as a friend is difficult and demanding, requiring careful planning. You want to be there to support and encourage your friends, but you must take care of yourself first and foremost.
The “unequal distribution of wealth, power, and prestige results in what is called social inequality” (Ferris, 2016, p. 182).
People with chronic illness are often unable to work. Many of them live on fixed incomes like Social Security Disability. This may force them into a lower socioeconomic class, which does not coincide with their education and earning potential. Poor people are stigmatized in our society. People with chronic illness are stigmatized in our society. Add the two together, and you get people who are hit with a double-whammy so to speak. People who, through no fault of their own, are sick and on fixed incomes, too poor to afford decent healthcare, living in low-rent housing. These people may be well-educated. They may have earned a good living at one time. Now they are forced to endure the stigma of poverty and illness. In one study, conducted in 2009 in Australia, it was found that “Participants reported limiting discretionary spending, cutting back on more expensive, healthier foods and reducing participation in regular exercise programs at a gym. Participants did prioritize expenditure on essential treatment, but a limited financial capacity meant many had to compromise in other areas, such as paying for vacations, home renovations and other activities considered important elements of their quality of life. Additional incidental expenses were amplified by the hardship, resulting in a need to make choices between expenditure for health care and other everyday expenses. This meant that paying even the bare minimum of living costs presented challenges” (Essue, Jan, Jeon, Wells, & Whitworth, 2009).
Chronically ill people tend to isolate themselves, and to hide their symptoms from friends and family, resulting in increased depression and decreased social support systems. When your chronic illness is misunderstood or simply not believed by the people in your life, it can be emotionally devastating (Sue, March 30, 2015). When friends and family get tired of your continual inability to commit to plans and repeated cancelling when you do make plans, they stop calling. The invitations stop coming in. Relationships become strained, and you stop talking about your illness because you think people must be tired of hearing about it (and sometimes you’re right). Isolation and lack of social support leads to decreased quality of life and increased self-stigmatization.
One area in which social change must be impacted for the chronically ill is healthcare. Responding to the stigma placed on them by healthcare workers, chronically ill people are less likely to seek medical care when needed. Then their quality of life decreases (Earnshaw & Quinn, 2011). This results in increased healthcare costs. Chronically ill people also tend to isolate themselves, and to hide their symptoms from friends and family, resulting in increased depression and decreased social support systems.
Unfortunately, “…most physicians, health care policymakers, and patients believe our health care system fails to meet the needs of people with chronic conditions” (Sipkoff, 2003). However, slowly but surely, insurance companies are implementing programs with a new focus on managing patients with chronic conditions. They are recognizing that the current model “usually features uninformed and passive patients interacting with an unprepared practice team" (Sipkoff, 2003). In several years we will hopefully see positive healthcare reform across the board for people with chronic illness.
It is still very difficult for people with many chronic conditions to obtain Social Security Disability Benefits. This is one area of social change in which I would like to see major improvement. People with chronic mental illness often lack the concentration and mental clarity to deal with the forms and paperwork required to apply for disability. And some chronic health conditions are not even recognized by the Social Security Administration as genuine disabilities. But here again, things are slowly changing for the better. People applying for Social Security benefits can get an Advocate to work with them to assist in filling out paperwork and communicating with the SSA. There are attorneys who specialize in Social Security benefits who work on an award-basis, meaning they don’t get paid unless they win your case. And, a major victory for many chronic warriors, fibromyalgia was recently recognized by the Social Security Administration as an “official” disability!
With increasing awareness of Christine Miserandino’s “Spoon Theory” (for more information see www.butyoudontlooksick.com), and the popularity of groups like the Spoonies, the Unchargeables, and other patient advocacy groups, the awareness of the stigma surrounding chronic illness is becoming more apparent. “Social stigma is based on ignorance and fear. Self-stigma occurs when you agree with and internalize social stereotypes. Both can lead to social isolation and depression.” (Sue, March 30, 2015) Only through education and advocacy will the stigma lessen.