Your phone buzzes. A message from a friend: “You alright? Not heard from you in ages.” Your fingers hover over the screen. You could tell them the truth. You could try to explain that you’ve been in a world of pain, that a flare-up has left you feeling exhausted and broken. But the thought of typing it all out, of trying to find the right words, feels like a monumental effort. So you type back a simple lie: “Yeah, all good mate, just been busy.”
This is a scene that every single person with Hidradenitis Suppurativa knows intimately. Talking about HS is hard. It’s a complex, emotionally loaded task that often feels more draining than the disease itself. But understanding why it’s so hard is the first step toward breaking that silence.
The Triple-Threat: Fear, Exhaustion, and the Burden of Being the Expert
The reluctance to talk about HS isn’t just one thing; it’s a perfect storm of three powerful forces that conspire to keep us quiet.
The Fear of Judgment
Let’s be blunt. HS can be messy. It can smell. It often affects the most private parts of our bodies. And because it’s so misunderstood, we live in fear of the reaction. We fear the flicker of disgust in someone’s eyes. We fear the ignorant questions that link it to poor hygiene. We fear being seen as “unclean” or “gross.” This shame is a powerful gag, silencing us before we’ve even spoken a word.
The Sheer Exhaustion of Explaining
How do you even begin to explain HS to someone who has never heard of it? You have to give them a full medical lecture: “It’s an autoimmune thing… no, it’s not contagious… it creates these things called sinus tracts…” You become an unwilling teacher, a medical expert, and a patient, all at once. Repeating this conversation over and over again, to friends, family, colleagues, and clueless doctors, is utterly exhausting. Sometimes, the silence is just easier.
The Burden of Downplaying
Often, we try to protect the other person. We don’t want to be a “downer” or a “moaner.” So we downplay our own reality. We say, “It’s just a bit of a flare-up,” when what we mean is, “I feel like my body is on fire.” This constant act of translation, of presenting a more palatable version of our own pain, is a heavy burden to carry.
The Breakthrough: Why We Must Force the Words Out
Staying silent feels safer, but the truth is, the silence is a cage. It’s what allows the isolation and the shame to fester and grow. Every time we choose to speak, we’re not just sharing information; we are fighting back.
Each conversation, no matter how small or awkward, is a victory. It’s a chance to replace their ignorance with your reality. It’s a chance to build a genuine support system, to let someone in who can help you carry the load. And it’s a chance to be your authentic self, without hiding or pretending. It’s an act of defiance that says, “This is part of my life, but it does not define me, and I will not be ashamed.”
Breaking the silence is the first, most crucial step in tackling the social isolation that comes with HS, a topic I’ve explored in more detail in another post. (I will add the link here once it is live!)
This is our collective responsibility. As the HS Foundation works to raise awareness on a global scale, our individual conversations are the grassroots of that movement.
It’s a hard fight, but it’s one we have to win. How did you first explain HS to someone? What was their reaction? Share your experience in the comments—your story could give someone else the courage to speak up.