Societal stigma and Hidradenitis Suppurativa

Lets talk a moment about societal stigma and how it affects Hidradenitis Suppurativa patients. Merriam Websters dictionary defines stigma as : “a set of negative and often unfair beliefs that a society or group of people have about something.” Stigmas are usually a bunch of prejudices and unrealistic expectations that we attach to certain situations or people, that help us gauge how bad the people or situation is. This is often a belief system that has been ingrained into us by society. These stigmas usually have a lasting impact on a patients emotions and self worth, as well as affecting many other aspects of their lives. Stigma brings experiences and feelings of: shame, hopelessness, blame, distress, misrepresentation in the media, reluctance to seek and/or accept necessary help.

Stigma against chronic illness is common and its impact is serious. Action is urgently needed to eliminate stigma so that people affected by chronic illness are included and valued as equal members of society. Families are also affected by stigma, which could lead to the patient’s lack of treatment and support.

If people with chronic illnesses such as Hidradenitis Suppurativa are going to be included as equally valued members of society, then stigma and all of its collective discrimination must be eliminated. This report examines the impact stigma has on the lives of people affected by chronic illnesses, such as Hidradenitis Suppurativa, and includes an overview of associated issues from the growing body of research in this field of study.

Stigma does not affect everyone with chronic illness the same way, so its effects can vary widely from person to person. Some groups are subjected to multiple types of stigma and discrimination at the same time, such as people with an intellectual disability or those from a cultural or ethnic minority. Some of the ways stigma can affect a person with chronic illness are: emotions and self worth, taboo and stigmatization, intimate relations, cognition, communication, precautions, economy and work.

Emotions and self worth:

Patients with a chronic illnesses such as Hidradenitis Suppurativa often find themselves battling feelings of depression, worry, helplessness, sadness, irritation, feeling of lack of control, suicidal idealization, and dependance. These can be hard to cope with in conjunction with the person’s HS. This varies depending on the symptoms of HS. Patients feel unworthy and not lovable when they have large/many scars and ongoing boils. Irritation, anger and sadness are often experienced when lesions appear. Sadness and worry also occur when patients are unable to do their work because of HS or if the treatment provided isn’t improving the disease. Patients generally find that their quality of life is reduced by HS. It is not exclusively dependent on HS. HS is a very important factor with quality of life because it is so painful and uncontrolled. The painful lesions often limit daily activities, such as moving around. This leads to a feeling of helplessness and dependency on other people during these periods. The aim of having control can be challenged. At times, HS is found to have taken control of the patients’ lives. As flares can last for many days, it easily results in depressive moods.

Taboo and stigmatization:

Patients with Hidradenitis often find themselves left with feelings of impurity. They may feel shy around others. Often times they are ashamed of the smell associated with HS abscesses. The scars may make them hide and feel self conscious of their body, which can lead to isolation. These feelings are particularly difficult to break. Many times they are often self inflicted due to self stigmatization (negative feelings and discrimination attached to self, associated with disease and self worth).

Intimate relations:

Hidradentis Suppurativa has lasting effects on a patient’s intimate life as well. They may find themselves struggling to find a partner. It affects the dynamic of relationships, as well as the sexuality of the HS patient. Often times Patients with a partner find comfort in the fact that they are in a relationship. Patients actively seeking a partner might avoid situations due to fears of scars or skin being exposed or telling that person that they have a disease. Fear of rejection is a big one when it comes to relationships and chronic illness, and it can make the task of dating even harder, whether it’s because of physical deformities or “grossing” out the romantic interest. Sometimes the dynamic of a relationship can change into that of a patient/caretaker role as well, which can pose its own challenges for a couple. Sexuality and Hidradenitis Suppurativa can be complex. Depending on where the patient experiences flares, sex might be difficult or even painful, which can affect intimate relations as well.

Cognition:

Hidradenitis Suppurativa patients especially have a hard time finding accurate information, or achieving a diagnosis. Often times after they do receive a diagnosis, the patients then struggle to find acceptance of the disease, both with themselves and within the community. Its very important for a chronically ill patient to have a diagnosis, especially after years of misdiagnosis or symptoms being treated as temporary symptoms. The patient’s quality of life is usually greatly hindered because of a large time gap of symptom onset and diagnosis. Often after the patient receives a diagnosis, they will be met with resistance in both the medical and professional field due to lack of medical knowledge and acceptance as well.

Communication:

Often times the societal stigma that goes along with a chronic illness such as Hidradenitis Suppurativa can leave the patient unable to talk about the disease. Most patients want to be able to talk about their affliction, but feel unable to share with certain people for fear of judgment. There is a need to find out how others manage and behave in daily life. Patients want to know that they are not alone with their experiences of the disease.

Precautions:

Patients who suffer from Hidradenitis Suppurativa will be the first to tell you how very far they go in taking precautions when it comes to their disease. Things like dressing, gestures, perfumes, tobacco, weight, sports and activities are all things that patients use to go to great lengths to conceal their affliction. Patients often have to re-haul their lives when it comes to chronic illness, and Hidradenitis Suppurativa is no different. Clothing can exasperate areas with flares, by friction and sweat. Many times it’s recommended they switch up styles of clothing, as well as self measures to hide drainage and stains on clothing. Gesturing and movement are commonly impacted, which in turn restricts sports or activities, as friction and sweating can make HS flare. Tobacco usage seems to affect the progression of the disease in early stages. After stage 2, quitting tobacco didn’t seem to make much of a change in their prognosis. Tobacco usage has been shown to slow healing processes down as well. [1]

Work and economical impact:

Hidradenitis Suppurativa patients often have to consider obstacles in their daily routine, such as job, colleagues, sick leave and cost of care. The type of work the patient is doing may be important depending on the location of the lesions. A job in which the patient has to stand or walk may be preferable because lesions between the buttocks and on the genital area make sitting difficult. Another option is a job at home with flexible hours during periods with painful lesions.

Misrepresentation on media:

With media in this day and age telling us beauty is queen and sexy is king, it’s easy to buy into all of the commercials and gimmicks telling you that to be normal you need to have flawless skin. In fact, the beauty industry is a multi million dollar industry, whose estimated revenue amounts about 62.46 billion U.S. dollars in 2016 alone.[2] Online video content is one of the most important social media marketing channels for beauty brands. In 2013, it was determined that from the 14.9 billion beauty-related video views, 9.8 billion belonged to makeup videos. [3] So obviously the beauty industry spends a lot of money trying to make viewers believe that “perfect” skin is “Beautiful.”

The fact of the matter is we all are faced with stigma, whether we view it in a commercial, we encounter it with our spouses, or we see it in the workplace. Stigma is all around us.

An Australian SANE study conducted in 2006 [4] found that nearly 1 in 4 of people felt depression was a sign of personal weakness and would not employ a person with depression. Around a third would not vote for a politician with depression. 42% thought people with depression were unpredictable. 1 in 5 said that if they had depression they would not tell anyone. nearly 2 in 3 people surveyed thought people with schizophrenia were unpredictable, and a quarter felt that they were dangerous. Those are pretty significant rates of stigma with most of them originating in the media as well. For example; when you think of smash hits like Stephen Kings “The Shining.” or Alfred Hitchcock’s “Psycho,” the antagonists suffer from mental illness and go on violent sprees, furthering the association between mental illness and violence. This can be the case with Hidradenitis Suppurativa and the beauty industry.

How can we eliminate stigma?

We all have a role in creating a mentally healthy community that supports recovery, social inclusion and reduces discrimination. Simple ways to help include learning and sharing the facts about mental health and chronic illness. Get to know people with personal experiences of chronic illness. Speak up in protest when friends, family, colleagues or the media display false beliefs and negative stereotypes. Offer the same support to people when they are physically or mentally unwell. Don’t label or judge people with a chronic illness, treat them with respect and dignity as you would anyone else. Don’t discriminate when it comes to participation, housing and employment. Speak openly of your own experience of chronic illness. The more hidden Hidradenitis Suppurativa remains, the more people continue to believe that it is shameful and needs to be concealed.

[1] [source: http://hidradenitissuppurativaawareness.org/smoking-and-skin-disease/ ]

[2] [source: https://www.statista.com/statistics/243742/revenue-of-the-cosmetic-industry-in-the-us/ ]

[3] [source: https://www.statista.com/topics/2381/beauty-brands-on-social-media/ ]

[4] [source: https://www.sane.org/images/PDFs/ALifeWithoutStigma_A_SANE_Report.pdf ]

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