Explaining Hidradenitis Suppurativa (HS) To Family

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By Nyaka Mwanza 

Hidradenitis suppurativa (HS) is a mouthful to say. It’s a condition that, while not uncommon, is lesser known — eliciting questions of “What is HS?!” from people who don’t have experience with the skin condition. While HS isn’t anything to be ashamed of, talking about it can feel difficult or embarrassing. But it doesn’t need to. In fact, talking about HS to friends and family will likely help you adapt to the diagnosis. This article will hopefully assist you in doing just that. 

About Hidradenitis Suppurativa

Hidradenitis suppurativa a systemic, inflammatory skin disorder. HS abscesses can occur anywhere body hair grows. HS manifests as painful nodules and fluid-filled abscesses in sensitive areas: armpits, breasts, and along the creases of the buttock and groin areas. These growths can also be odorous and uncomfortable, and greatly affect a person’s quality of life. A chronic condition, HS unfortunately has no cure at this time. HS is easily confused with other disorders, which can delay proper diagnosis and treatment. 

Is HS Contagious?

You can neither catch HS nor spread HS to another person. While the exact cause of HS is unknown, genetics may play a role. Forty-four percent of people with HS have a relative with the condition.

Is There a Cure for HS?

There is no cure for HS at this time. It is a chronic condition. That said, it is a manageable and treatable disease. In several cases, HS becomes inactive for long periods after successful treatment.

Is HS Caused by Poor Hygiene?

The idea that HS is associated with poor hygiene is a common myth. HS has nothing to do with how frequently you bathe or shower. In fact, this misconception contributes to the stigmatization of people with HS.

How Can HS Affect Your Life?

HS abscesses can be so painful that the disorder can be debilitating. The chronic condition can and does affect a person’s quality of life. People with HS experience anxiety, depression, and social isolation at higher rates than the general population.

Talking To Your Family

HS can take a real toll on your mental health and your quality of life. Social and emotional support are a critical component in your effort to treat and manage your HS. 

These tips might make some of your initial conversations a little easier:

  1. Honesty is the best policy. Be honest about how you’re feeling, both physically and mentally. Don’t be ashamed or afraid to speak up. If you don’t know the answer to a question or don’t feel like talking, say so.
  2. Go at your own pace. Try to relax and be prepared when bringing up the subject of HS with your family. Choose a time when no one’s in a hurry. You might want to pick a place in which you’re generally comfortable, e.g., sitting around the kitchen table. 
  3. Ask for what you need. Asking for help is difficult for many of us. If your HS symptoms become particularly bad, you may need more support. One way to make it easier for both you and your family is to identify specific ways your loved ones can help you. For example, you could ask them to pick up groceries or help with child care. 

Once you’re able to talk about your HS with the people closest to you, they’ll be better able to understand what you’re going through and how they can support you.  

Nyaka Mwanza is a freelance writer for MyHealthTeams. She completed a B.A. in Communications: Visual Media from American University and undertook post-baccalaureate studies in Health/Behavioral Communications and Marketing at Johns Hopkins University. Nyaka is a Zambian-born, E.U. citizen who was raised in sub-Saharan Africa and Jacksonville, N.C. However, she has called Washington, D.C., home for most of her life. For much of her career, Nyaka has worked with large global health nonprofits focused on improving health outcomes for women and children. Nyaka believes words hold immense power, and her job is to meet the reader where they are, when they’re there.

References

  1. Conversation Guide — No BS about HS
  2. When Your Relative Has Hidradenitis Suppurativa — Patient Association HS Danmark 
  3. Talking About Hidradenitis Suppurativa (HS) — No BS about HS 
  4. What is hidradenitis suppurativa? — Canadian Family Physicians 

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