Hidradenitis suppurativa (HS) is a complex auto-inflammatory disease that can lead to severe effects on your body. The chronic skin condition can cause the formation of nodules and abscesses in areas such as the groin, armpits, thighs, buttocks, and breasts.
Regardless of where HS shows up or its level of severity, the condition can be physically burdensome. But pain and disfigurement aren’t the only obstacles people navigate.
Researchers are beginning to pay attention to how HS affects a person’s quality of life and, more specifically, their mental health.
Although the data for HS and mental health challenges is sparse, this study indicates a correlation between the disease and conditions like:
- bipolar disorder
- personality disorders
Still, more research is needed to fully understand these connections.
While HS is relatively uncommon, it’s not rare. The true rate of HS is unknown, but researchers do know that it disproportionately affects some groups of people.
In Europe and the United States, research estimates that HS may affect as low as
To break this down further, about 0.10 percent of the U.S. population is affected, or 98 per 100,000 people. The rate is even higher among women, African Americans, and biracial Americans.
With that being said, even though African Americans are disproportionally affected by HS, the data for Black people with HS navigating mental health services is little to none.
Dr. Angelique Andrews, PhD, CWP, CHWC, of Wellness Consultants of Atlanta LLC, says researchers need to do a better job at understanding all of the psychosocial biological factors that go into living with HS.
And more specifically, how those facets can impact the Black community when navigating healthcare and psychology.
“[The African American] population has been underserved at looking at these three variables [HS, mental health, and race] to find out more about causation and correlation,” Andrews says.
“We need more researchers who are interested in not just experimenting, using us as guinea pigs, but who really want to understand how to treat a Person of Color, African Americans more specifically. What are their needs? What does their social-economic status look like? Are they food insecure?” she says.
There is a combination of reasons people with HS have difficulty seeking mental health treatment. This can include shame, embarrassment, and a lack of resources.
For People of Color, those difficulties can be amplified due to historical and systemic factors. This can cause members of these communities to face mental health conditions in silence.
According to a 2021 report from the Census Bureau that looked at 2020 data, 18.3 percent of Hispanic people were uninsured, followed by 10.4 percent of Black Americans. This is compared with 5.4 percent of non-Hispanic white Americans.
While government-subsidized programs do exist, health insurance is usually attained through employment, and unemployment rates and poverty are generally higher in these populations. As of 2018, more than 1 in 5 Black and African American people were living in poverty, often with limited to no access to mental health services.
In addition to socioeconomic factors, systemic inequalities and historical racism also play a major role.
Compared with white people who experience the same symptoms, Black and African American people are more likely to receive a diagnosis of schizophrenia and less likely to receive a mood disorder diagnosis. This type of historical racism has increased mistrust of medical professionals among People of Color.
There are also cultural stigmas that prevent people from seeking mental health treatment.
Andrews mentions that Black people may avoid mental health treatment because they think seeing a counselor or a psychologist means they’re “insane” or “crazy.”
“[They feel] that it’s going to cause a disgrace on the family and for [themselves], and we tend to avoid that because we have been a strong and proud people,” says Andrews.
Despite these barriers to access, People of Color do have some resources at their disposal.
For instance, the HS Foundation has a section where people can find an HS specialist in their area. These specialists may be able to provide referrals to therapists who either specialize in HS and mental health or chronic illnesses in general.
HS Connect is another resource that is run by people living with HS. It provides helpful information on topics such as finding a psychologist and navigating the complexities of the healthcare system, as well as battles with insurance and knowing which procedures and treatment to ask for.
Joining online communities can provide support for people as well. Examples include:
Following community advocates and health and wellness influencers on social media, like Instagram and TikTok, can be beneficial for some people. Oftentimes, social media can help people feel less alone in their experiences.
“Social media makes it so easy for people to reach out and find other people like them,” Andrews says. “In those support groups, those stigmas are removed… they see other People of Color. They see other people in the same socioeconomic group, same religion, and the same sexual orientation. [There’s] a whole sense of support and knowledge.”
HS can affect both your physical health and mental health. While the condition is relatively uncommon, it disproportionally affects African Americans and biracial Americans.
These populations face several barriers to care, particularly when it comes to mental health treatment, due to factors like stigma and systemic racism. Despite these barriers, support is available, whether online or through a mental health professional.