Being diagnosed with hidradenitis suppurativa (HS) can feel overwhelming, confusing, and isolating. One minute, you’re trying to figure out why your skin is reacting the way it is, and the next, you’re sifting through a sea of conflicting information. It’s a lot. But here is the truth: 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 Way More Common Than You Think
You might feel like you’re the only one, but you’re not. HS affects about 1% to 4% of people worldwide. The issue is, it’s often misdiagnosed or not diagnosed at all, so many people are left to suffer in silence far longer than they need to. But there is a silver lining: you are part of a surprisingly large, brave, and quietly tough community. Finding the right support can make a big difference.
2. This Is Not Your Fault
Let’s set the record straight: HS isn’t caused by bad hygiene, and it’s not something you brought on yourself. Experts believe that HS is triggered by a mix of genetics, hormones, and immune system issues. It’s just how your body’s internal wiring happens to work sometimes, much like having allergies or needing glasses. It’s not your fault, and it’s important to remind yourself of that. You’re doing the best you can with what you’ve been given.
3. Some People Are More Prone to HS
HS doesn’t discriminate, but certain factors make you more likely to develop it:
- Sex – Women are twice as likely to get HS as men
- Age – Most cases appear in young adults between 18 and 29
- Family history – Up to 40% of people with HS have a family member with it too
- Ethnicity – Research suggests that African Americans are 2.5 times more likely to have HS when compared with other groups
- Lifestyle factors – Practices like smoking or carrying extra weight don’t cause HS, but they can make it harder to manage the condition
Understanding 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
Often, HS starts with a feeling, not a visible bump. Many people report a strange, almost sixth-sense type of awareness before they see any lumps. It might feel like burning, itching, tightness, or even an odd discomfort that you can’t quite explain. If you start feeling off, especially in high-friction areas like your armpits, groin, or under your breasts, take it seriously. These early signs can quickly progress, so don’t wait to talk to your healthcare provider. Early action can keep things manageable.
It bears saying again – listen to your skin. Don’t ignore it if something doesn’t feel right, especially in spots where skin rubs together, and connect with a healthcare provider who understands HS.
5. Early Treatment Matters
HS can sneak up on you, starting as something minor that slowly escalates. If left untreated, it can turn into deep, painful lumps and, eventually, abscesses. Over time, this can lead to scarring and skin changes.
Here’s how HS often progresses:
- It begins with a strange sensation – maybe 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 turn into abscesses – collections of fluid that can grow, connect under the skin, and eventually burst, draining pus or blood
- Over time, these draining areas may form tunnels (called sinus tracts) beneath the skin’s surface
- Scarring can follow, leading to 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 significantly improve your chances of managing the condition effectively.
6. HS is Stealthy – But So Is Staying Healthy
HS has a frustrating talent for stealth. One day, your skin feels perfectly fine, and the next, you are dealing with a painful flare-up that seems to come out of nowhere. It’s like having a ninja lurking beneath the surface: quiet, unpredictable, and striking at the least convenient moment.
The unpredictability can be frustrating, especially when you feel like you’re doing everything right. But here’s the secret: you can be stealthy too! Learning your triggers, like stress, heat, friction, or certain foods, is like training in your version of ninja school. It helps you stay a step ahead.
Managing HS doesn’t mean eliminating every flare, but it does mean building smart habits, sticking with your treatment plan, and listening closely to what your body is telling you. With time, you’ll sharpen your ability to spot early signs and respond before things escalate.
Think of it this way: HS may be stealthy, but healthy is your counter move – and it’s one you can master.
7. You’re Not the Only One Googling at 2 AM
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 gets it. But as it turns out, you’re not the only one Googling weird skin stuff. Welcome to the club.
Millions of people around the world are living with HS, and many of them are asking the same questions, facing the same frustrations, and looking for the same answers. Thankfully, many of them are also finding each other. Online communities, support groups, and advocacy organizations focused on HS can be a lifeline – whether you need advice, encouragement, or just someone to say, “Yep, I’ve been there too.” And for those moments when it’s hard to talk about what you’re going through in real life, it can feel easier to connect behind a computer screen with someone who understands.
Finding a community won’t make HS disappear, but it can make your path feel much less lonely and more manageable.
8. Early Diagnosis = Better Outcomes
HS is a progressive condition, but with early recognition and expert care, the trajectory can change dramatically. At Thrive Reconstructive Surgery, we’ve seen firsthand how early intervention leads to more manageable flares, fewer complications, and better long-term outcomes. Whether it’s targeted medications, minimally invasive procedures, or lifestyle advice, our goal is to work with you to create a personalized care plan.
That plan might include:
- Targeted medications to reduce inflammation and prevent flare-ups
- Minimally invasive procedures to address persistent nodules or abscesses
- Surgical care, when appropriate, focused on preserving function and dignity
- Guidance on lifestyle strategies that reduce triggers and support immune health
While every case is different, one truth holds: early action empowers you to take control of your health and make 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 is no “magic fix” for HS, small 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 – ditch harsh soaps and aggressive scrubbing
- Manage stress – whether through yoga, meditation, or a hobby that helps you unwind
- 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 entitled, “Hope on the Menu: Can What You Eat Help Hidradenitis Suppurativa?”)
Everyone’s experience with HS is unique, so it’s about finding what works best for you. The goal is simple: sustainable changes, not overnight transformations.
10. The Right Care Team Makes All The Difference
Managing HS is a journey, and the right team can make your journey a whole lot easier. You deserve a care team that listens to you, is up-to-date 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. Whether it’s dermatologists, surgeons, or mental health professionals, we’re here to support you at every step. Don’t settle for “good enough”. Your health is worth the best, and that’s exactly what we aim to provide – not just treatment, but real, thriving care.
Let’s keep going, 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.