Talking To Your Friends About HS

When I was first diagnosed with hidradenitis suppurativa, I felt an overwhelming sense of loneliness. Anyone who has been diagnosed with HS has probably gone down the same rabbit hole that I did – scouring the internet for information and coming across the same list of suggested questions on Google. Is HS a sexually transmitted disease? Can you get HS by touching someone with HS? Do people get HS because they have bad hygiene habits? As someone who did not know anyone else with HS, seeing those search results was horrifying. While I wanted to be able to talk to my friends about having HS and what that meant for my everyday life experience, I was terrified of them seeing those search results and getting a completely incorrect picture of how one gets diagnosed with HS and what HS was really like.

In order to make talking to my friends about HS easier, I decided to script what I was going to say and also set some boundaries for myself. Both the script and the boundaries have helped me create productive dialogue with my friends, which makes me feel heard and understood.

Doing research

First, I made sure to do my own research on HS. I scrolled past all the sites with fear-mongering content and falsities, and instead made sure to read medical journals or studies. It was important for me to have a good understanding of HS before I went on to explain it to anyone else. How could I expect my friends to understand it if I lacked knowledge on the subject?

Planning ahead

Second, I planned out what specifically I wanted to tell my friends about HS. This will differ for everyone depending on how much they want to or feel ready to share. I knew that I wanted my friends to get an overview of what HS is, how one can develop HS, and what having HS means for my day to day life and how it could potentially impact our friendship. Since I did research before talking to my friends, I had articles with more information ready to provide to my friends with further explanations or additional questions.

Encouraging open dialog and limiting judgment was key: I gave my friends some leeway when it came to asking uncomfortable or potentially inappropriate questions because I knew that they were coming from a good place.

Setting boundaries

What’s important to remember is that in spite of the open conversations that you might have with your friends, it’s critical to identify and set personal boundaries. Everyone has different levels of comfort with disclosing information about their health, so it’s important to verbalize those boundaries. You do not owe anyone any of your personal medical information just to appease their curiosity, especially if the question is extremely invasive.

If I feel that my friends have crossed or will cross that line when it comes to questions, I’ll say that I’m not comfortable sharing that. However, by making these boundaries clear with others and sharing what you are willing with your friends, you can make sure everyone’s needs are met and grow closer together.