Illness, stigma and a path forward

Public announcements by prominent women served a nationwide effort to forge contact between the public and public figures who had breast cancer, such as First Lady Betty Ford, helping give humanity to the illness.

“Men and women, but men in particular, are squeamish even thinking about damage to sexual function. … that plays a huge role in the fact that so few people understand anything about it until it starts to impact their life.”

We got this message from an Addison County resident recently diagnosed with prostate cancer, which can cause sexual dysfunction.

Approximately one in six individuals with a prostate — likely more — will have prostate cancer at some point in their life. This could, and likely will, be you or someone close to you: a friend, a sibling, a spouse, a parent. And yet so many people have a limited understanding of the disease. Conversation around prostate cancer can be difficult for many to engage in because it involves discussion of sexual activity and the possibility of impotence, both highly stigmatized topics.

Stigma, the negative perception of people deemed different or disadvantaged, often prevents individuals with a variety of illnesses from getting treatment and living fulfilling lives. Diagnoses of cancers, mental illness and HIV, for instance, can sometimes bring social stigma on individuals, this limiting an entire population’s willingness to seek healthcare and reducing their access to care and to their networks of support.

Mental illness affects at least one in five Americans. As one of the most common health challenges in this country, the stigma that exists around mental health poses a significant barrier to care for a large portion of the population. The shame and guilt associated with this affliction may lead to fear and exclusion, coercive and withheld treatment, and treatment avoidance by patients. Segregated institutions for the mentally ill in the mid-20th century with experimental and sometimes cruel treatments are examples of the effect of stigma around mental illness.

Stigma surrounding HIV poses similar social difficulties. People living with HIV/AIDS are often unable to disclose their HIV status to those around them due to fears of social rejection because of their disease. HIV/AIDS disproportionately affects members of the LGBTQ community in the United States, and many associate HIV with drug use and homosexuality, two things looked down upon within many communities and by prominent institutions such as the Catholic Church. Combined with the fact that people with HIV are disproportionately shaped by social determinants of health (lack of education, minimal healthcare and poverty, for example), this stigma adds another dimension of difficulty to daily life and a patient’s ability to find community support.

Due to stigma, mental illness and HIV, patients experience barriers to care that do not exist in other illnesses in which shame and guilt are less common. It is important to destigmatize these illnesses in order to advocate for the general health and well-being of those diagnosed with alienating illnesses such as prostate cancer.

While stigma presents a barrier to healthcare for many individuals, there is hope. Researchers Patrick W. Corrigan and Amy C. Watson, prominent members of the field of social psychology, have developed a three-step process for combating mental health stigma on a societal level. This framework can likely be applied to many different stigmatized ailments.

The framework includes protest, education and contact. Protest aims to draw attention to and stop negative or misleading depictions of mental illness, such as the perception of mental illness as a character flaw. Once protest has stopped negative portrayals, education of the general public and increasing contact with people who suffer from mental illness serve as progressive efforts, creating positive dialogue around mental illness.

This process was seen in the progressive destigmatization of breast cancer experienced in American society in the late 20th century. Protest was undertaken by women who challenged the paternalistic and authoritative treatment of female breast cancer patients in writing memoirs. Efforts at disseminating information were spearheaded by books, namely one titled “Our Bodies, Ourselves,” that centered on educating women about their anatomy and health. And public announcements by prominent women served a nationwide effort to forge contact between the public and public figures who had breast cancer, such as First Lady Betty Ford, helping give humanity to the illness.

The efficacy of the framework developed by Corrigan and Watson to destigmatize breast cancer decades ago reveals its potential for success with destigmatizing other forms of cancer and other illnesses.

This outline presents medical professionals and public health experts with a promising roadmap for destigmatizing some of the most socially difficult illnesses in the United States. It also shows individuals and communities the importance of changing our attitudes toward currently stigmatized health challenges.

It is these changes that will help make our families, friends, neighbors and coworkers feel more supported and get treatment more smoothly when on their healthcare journeys.


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