Being diagnosed with hidradenitis suppurativa (HS) can feel overwhelming, confusing, and isolating. One moment you’re wondering why your skin is reacting this way, and the next you’re faced with a flood of conflicting information. It’s a lot to handle. But here’s what we want you to know: You are not alone. You didn’t cause this, and there is a clear path forward.
Here’s what we wish someone had told us earlier…
1. HS Is More Common Than You Think.
It can feel like you’re the only one going through this—but you’re not. HS affects an estimated 1% to 4% of people worldwide. Because it’s often misdiagnosed or overlooked, many people live with it far longer than they should. The good news is you are not alone—you’re part of a surprisingly large, brave, and resilient community of people who understand what you’re facing. With the right support and care, things can get better
2. This Is Not Your Fault.
Let’s set the record straight: HS isn’t caused by poor hygiene, and it’s not something you brought on yourself. Experts believe HS is linked to a mix of genetics, hormones, and immune-system factors. It’s simply how your body’s internal wiring happens to work sometimes, much like having allergies or needing glasses. None of this is your fault, and it’s important to remind yourself of that. You’re doing the best you can, and that matters.
3. Some People Are More Prone to HS.
HS can affect anyone, but certain factors may increase the likelihood of developing it:
- Sex: Women are about twice as likely to get HS as men
- Age: Most cases begin in young adulthood, typically between ages 18 and 29
- Family history: Up to 40% of people with HS have a close family member with the condition
- Ethnicity: Research shows African Americans are about 2.5 times more likely to have HS than other groups
- Lifestyle factors: While smoking or carrying extra weight do not cause HS, they can make symptoms harder to manage
Knowing these factors can help you advocate for yourself and get the early care that leads to better outcomes.
4. You Might Feel It Before You See It.
HS often starts with a feeling rather than a visible bump. Many people describe a strange, almost “sixth sense” type of awareness before anything appears on the skin. It may feel like burning, itching, tightness, or just an unusual discomfort that’s hard to explain. If you notice these sensations—especially in high-friction areas like your armpits, groin, or under your breasts—take it seriously. These early signs can progress quickly, and talking to a healthcare provider can make a big difference in keeping symptoms manageable.
It’s worth repeating: listen to your skin. If something doesn’t feel right, especially in areas where skin rubs together, reach out to a provider who understands HS. Early care can give you the best chance at relief.
5. Early Treatment Matters.
HS often starts small, but without treatment it can gradually worsen. What begins as a minor irritation may progress into deep, painful lumps and eventually abscesses. Over time, this can cause scarring and lasting skin changes.
Here’s how HS often progresses:
- It may begin with a strange sensation—burning, itching, or a tender spot that feels like a pimple or ingrown hair.
- That tender spot can swell into a deeper lump or nodule that’s painful to the touch.
- Nodules may develop into abscesses, which are pockets of fluid that can grow, connect under the skin, and sometimes burst, draining pus or blood.
- Over time, these draining areas can form tunnels (called sinus tracts) beneath the skin’s surface.
- Scarring may follow, causing thickened skin or changes in texture and appearance in the affected areas.
The good news? You don’t have to wait for things to get worse. With early diagnosis and a proactive treatment plan, you can prevent long-term damage. Partnering with the right provider early on can greatly improve your ability to manage the condition effectively and protect your quality of life.
6. HS Is Stealthy—But So Is Staying Healthy.
HS has a frustrating way of sneaking up on you. One day your skin feels perfectly fine, and the next you’re dealing with a painful flare that seems to appear out of nowhere. It can feel like a hidden opponent—quiet, unpredictable, and striking at the least convenient moment.
The unpredictability can be discouraging, especially when you feel like you’re doing everything right. But here’s the secret: you can be stealthy too! By learning your personal triggers—whether it’s stress, heat, friction, or certain foods—you can take steps to stay ahead.
Managing HS doesn’t always mean preventing every flare, but it does mean building smart habits, following your treatment plan, and paying close attention to what your body is telling you. Over time, you’ll get better at spotting early signs and responding before things escalate.
Think of it this way: HS may be stealthy, but your path to staying healthy is your countermove—and it’s one you can master.
7. You’re Not the Only One Googling at 2 in the Morning.
If you’ve ever found yourself down an internet rabbit hole at 2 a.m., searching “Why does my armpit hurt like this?”—you’re in good company. HS can feel incredibly isolating, especially when it seems like no one around you understands. But as it turns out, you’re far from the only one googling weird skin stuff late at night, looking for answers. Welcome to the club.
Millions of people around the world are living with HS, asking the same questions, facing the same frustrations, and looking for the same answers. Thankfully, many of them are also finding each other—through online communities, support groups, and advocacy organizations focused on HS. These connections can be a lifeline, offering advice, encouragement, and the comfort of hearing, “I’ve been there too.” And for those moments when it’s hard to talk about what you’re going through in person, it can feel easier to connect online with someone who understands.
Finding a community won’t make HS disappear, but it can make the journey feel far less lonely and much more manageable. Sometimes, just knowing there are others out there who truly get it makes all the difference.
8. Early Diagnosis = Better Outcomes.
HS is a progressive condition, but with early recognition and expert care, its course can change dramatically. At Thrive Reconstructive Surgery, we’ve seen firsthand how early intervention leads to more manageable flare-ups, fewer complications, and better long-term results. From targeted medications to minimally invasive procedures and practical lifestyle guidance, our goal is to partner with you to create a personalized care plan.
That plan may include:
- Targeted medications to reduce inflammation and prevent flare-ups
- Minimally invasive procedures to address persistent nodules or abscesses
- Surgical care, when needed, focused on preserving both function and dignity
- Lifestyle guidance to help reduce triggers and support your overall health
While every case is unique, one truth remains: early action empowers you to take control of your health and make confident, informed decisions. And you deserve care from a team that recognizes the complexity of HS and the strength it takes to live with HS every day.
9. Small Lifestyle Changes Can Be Big Wins.
While there’s no single “magic fix” for HS, small, consistent changes can go a long way in making life more comfortable:
- Choose soft, breathable fabrics that won’t irritate your skin or trap sweat.
- Be gentle with your skin by avoiding harsh soaps or aggressive scrubbing.
- Manage stress through yoga, meditation, or hobbies that help you relax.
- Watch for food triggers—some people find that cutting back on dairy, sugar, or yeast-heavy foods can help reduce flare-ups. (See our blog “Hope on the Menu: Can What You Eat Help Hidradenitis Suppurativa?” for more insight.)
Everyone’s experience with HS is unique, so it’s about finding what works best for you. The goal is simple: sustainable changes that support healing and comfort over time, not overnight transformations.
10. The Right Care Team Makes All the Difference.
Managing HS is a journey—and having the right team by your side can make that journey feel a whole lot easier. You deserve a care team that truly listens to you, stays current on the latest treatments, and works with you to create a plan that fits your life. At Thrive Reconstructive Surgery, we believe that a collaborative approach is key. From dermatologists to surgeons to mental health professionals, we’re here to support you every step of the way.
Don’t settle for “good enough.” Your health is worth the very best, and that’s exactly what we aim to provide—not just treatment, but care that helps you truly thrive.
Let’s move forward, together. Reach out to Thrive Reconstructive Surgery to explore your options and get the care and answers you deserve.
You’ve got this. We’ve got you.