How To Tell Your Friends About Hidradenitis Suppurativa
If you're like me, then you dread the idea of having to reveal some of the most vulnerable parts of yourself to people who are close to you. Some of this may have to do with beauty pressures but the other part maybe you just don't know how others will show up for you. It's completely valid to feel this way because it's a defense mechanism. However, these defenses can keep us from living in our authentic selves and can potentially bar us from deepening our relationships because the nature of our condition is very isolating. There are four major things I've learned that have aided me in opening up to my friends about my chronic illness.
Assess your relationship
Not everyone needs to know the most intimate details of your life, but deciding who is most important to tell will save lots of heartache. To be truthfully honest, no one is obligated to know what you're going through especially if it doesn't affect them, but telling someone can help to not only provide more emotional support for yourself but just build a community of individuals you can lean on. I wouldn't necessarily tell my associates the same things I would tell my best friend or even my mother. So, knowing who in your circle you want to speak about your experience with is pivotal in my mind.
Pick your location
This might seem like a very minor detail in the grand scheme of things, but picking where you choose to disclose information plays a huge part in how that information will be retained and received. The nature of hidradenitis suppurativa is that it's unpredictable so you might be at an amusement park with a group of friends when a boil bursts.
While this isn't necessarily an ideal space just because of the vulnerability and shame that might arise to tell your friends you have hs it is a good catalyst. Also, you don't have to wait until some devastating situation arises. It could be through text or a video call or an intimate dinner. You choose how you want to set the tone.
Dr. Erin Martinez is an amazing social worker who specializes in treating HS patients mentally and emotionally. For an article I produced for Rewire.org, I spoke with her about how chronically ill patients can talk to their partners about their condition. She advised patients to choose something that is less vulnerable to test the waters and see how they will react to that. This will let you know if they have space to even take this information on.
On top of that, cushioning the conversation with expectations is also important to control the outcome. Maybe you tell your friend, "Hey, I want to share something personal with you, and before I get into it I would love to set some boundaries on how I would like you to respond." Then you can list some boundaries like maybe you don't want them to ask a lot of questions right off the bat.
Your true friends won't abandon you
I know it's cliche to say but it's absolutely true: People who leave your life when times get hard are either only there for a season or were never meant to be there in the first place. Whatever it may be, try not to take offense to those who may not accept what you're presenting to them. Everyone has their own process that they go through when taking in new and important information.
You may still want to keep the friendship, but know this isn't a topic you need to speak with them about. Know that you can only control so much and those are the things we should be focusing on. I know that's easier said than done because the conversation was initiated to find some sort of acceptance but know if someone doesn't accept you that doesn't mean no one ever will.
Have you taken the Hidradenitis Suppurativa In America survey yet?