What Not to Say to Someone With HS
Before speaking words you come to regret, check out these smart and sensitive talking points.
Hidradenitis suppurativa (HS) is a chronic inflammatory condition characterized by super-painful bumps, known as nodules, that form under the skin where hair follicles are most prevalent, so typically in the groin and underarms. The thing is: Since these nodules can look like other skin ailments—including but not limited to acne, boils, and folliculitis—there’s a great deal of confusion and misinformation surrounding HS, even in medical settings (more on that later). Unfortunately, the lack of information and awareness on HS often leads to unsolicited or insensitive comments from people—including friends and family members who may very well have good intentions, but simply aren’t educated enough on the disorder to understand that what they’re saying is hurtful.
We’re here to help. Ahead, you’ll find five things that should never be said to someone with HS—along with a few helpful tips for people on how to respond in a way that generates education and empathy.
Never Say: “Isn’t it just like bad acne?”
As a general rule, it’s never a great idea to compare skin conditions, as everyone’s experience is unique and skin disorders—including HS—vary so much in terms of severity. For instance, while some folks with the condition may have a spattering of small, blackhead-like bumps, others will experience extremely painful boil-esque nodules that eventually burst and come back repeatedly, as well as painful tunneling under the skin that can feel unbearable. That being said, when asking questions about HS, try to keep them more open-ended and feelings-focused. “I’m sorry you’re going through this; what does it feel like?” and “Are you comfortable telling me what your HS feels like?” are both solid alternatives that will make your loved one feel seen and heard, without diminishing their situation.
Suggested response: When someone does compare your HS to another skin condition such as acne, it’s first important to recognize that your loved one is more than likely well-intentioned and not coming from a bad place. With that said, this is a prime opportunity to educate them on your condition and demonstrate just how different it is than acne and other common cutaneous disorders. If you feel comfortable, you can show them photos to illustrate what’s actually happening under the surface of your skin. Or, you can simply explain to them the ways in which it differs from acne (i.e. acne doesn’t involve painful tunneling under the skin).
Never Say: “Have you tried….?”
“When you’re someone who’s trying so hard to find answers, there are few things more frustrating than hearing, ‘Oh, you should try this really basic thing,’ whatever it may be,” says Matt Traube, a licensed psychotherapist based in Boston and Southern California who specializes in the psychological aspect of skin conditions. Just imagine how frustrated you’d feel if you were struggling with a complex disease and trying everything under the sun to fix it, and then someone suggests “drinking more water” or “doing yoga.” A fab rule of thumb? Don’t offer unsolicited advice unless you’re a medical professional or your loved one asks you for it.
Suggested response: If you have HS and get unrequested advice from a loved one who you know means well, try saying something like: “Hey, I appreciate you thinking of me, but I’m just taking advice from my doctor because it’s such a complex condition and, sadly, drinking more water (or whatever they suggest) isn’t going to be the cure-all in this case.” Moreover, use it as an opportunity to teach them more about HS and how it’s typically treated.
Never Say: “You’ll outgrow it.”
This one actually sounds cringe-worthy. When it comes down to it, just ask yourself: If you were sick or suffering from a skin condition like HS, what would you want to hear? Safe to say probably not: “Oh, it’ll most likely just go away someday” from someone who truly has no idea. As Traube explains, “People tend to trivialize skin in a way that they don’t other medical issues.” Our best advice? Don’t be that person. Saying something like “You’ll outgrow it” can be incredibly invalidating to someone with a serious skin condition like HS, which impacts a person both physically and mentally.
Take it from D.C.-based board-certified dermatologist Adam Friedman, M.D., who drives home how serious HS can be. “Hidradenitis suppurativa is a chronic and life-long condition,” says Dr. Friedman. “And the kicker is that the data shows the time from onset to diagnosis is on average seven to 10 years, which is absolutely unacceptable.”
Suggested response: Traube recommends using “I feel” statements in these types of scenarios as it removes any accusatory language that could potentially make your loved one get defensive—plus, it presents an opportunity for meaningful dialogue. For instance, if someone says to you, “Oh, you’ll outgrow it,” try responding with an I feel statement like, “That would definitely be ideal, but I feel pretty debilitated by it and unfortunately, from what I’ve been told, it’s a lifelong condition that can sometimes get better, but also sometimes get worse. So, it’s pretty impossible to know.” This way, you’re explaining how it’s affecting you, while gently educating them on the facts of the disease.
Never Say: “Oh c’mon, just suck it up.”
You’d never tell someone with diabetes or multiple sclerosis to just suck it up, right? Well, the same should be said for skin conditions like HS. You might be trying to make a joke, but it comes across the same as telling someone with cancer to quit complaining. Traube says this is a common one he’ll hear from parents who simply haven’t grasped or come to terms with how much their child is suffering. From a psychological standpoint, using this type of language can be very harmful for someone with HS—especially if they hear it over and over again. It not only invalidates their experience but can also potentially cause one to internalize their feelings and place blame on themselves.
Suggested response: “Even when it’s hard, you want to try and educate other people by offering a deeper understanding of what your experience is like,” Traube says. “Once people can relate more to the experience, that’s when they become more sensitive.”
Never Say: “I had something that looked like that once and it got better.”
A statement like this is almost always meant with good intentions, but as Traube explains, it can feel tone-deaf to someone who’s struggling with a serious and chronic condition. At the end of the day, it’s never a good idea to compare your ailments to someone else’s. Instead, if someone with HS shares how they’re feeling or what their symptoms are, tell them you’re sorry they’re going through this, and remind them you’re there with support and love whenever they need it.
Suggested response: If a friend or family member hits you with this one, simply share the facts with them. Try something like: “I wish that was the case, but I got a hard diagnosis from my doctor and it’s a chronic condition that doesn’t go away unless you get surgery, and even then the disease comes back one-third of the time.” This gives them some basic knowledge about HS and demonstrates the seriousness of your condition, yet at the same time, it doesn’t invalidate their experience either.
Rare Disease Database: National Organization for Rare Disorders. “Hidradenitis suppurativa.” rarediseases.org/rare-diseases/hidradenitis-suppurativa/