What Is Hidradenitis Suppurativa? Breaking Down the Basics

Living with Hidradenitis Suppurativa (HS) is one of those challenges that goes unspoken far too often. It’s a condition that changes how you move through the world, impacting your physical health in profound ways and carrying an emotional weight that is hard to describe. If you’ve been living with HS, boils, and tunneling, or are just beginning to understand it, know this before anything else: You are not alone, and you don’t have to face this by yourself. Today, I want to talk about what HS really is, what it feels like to live with it, and how we can find moments of hope and strength, no matter how tough the struggle might seem.

What is Hidradenitis Suppurativa, aka HS?

Hidradenitis Suppurativa, or HS, is a chronic skin condition that causes painful boils, lumps, and lesions, often in areas where the skin rubs together, like underarms, groin, and underneath breasts. Over time, these lumps can burst, leaving scars and open wounds that make even the simplest everyday tasks challenging. HS isn’t just “a skin condition.” It’s not as simple as a rash or something a topical cream will make disappear overnight. It’s a lifelong condition(according to Western medicine) that often comes with frequent flare-ups, pain, and frustration. The physical symptoms are hard enough, but the emotional toll can run even deeper, as it impacts your confidence, mental health, and relationships. For instance, when I was around 18 years old, I started to notice these flare-ups. Every doctor told me that I was overweight and needed to shower more. I was a curvy 18-year-old, and I showered ...maybe three times a day if I had school and work. It was embarrassing to be told to shower more, especially when the doctor didn't really ask about my shower routine to begin with. The only way that I can describe the feeling of having a flare-up is being in a constant state of pain where your skin is stretching due to the growth of the boil, causing tenderness and irritation beyond just the bump, but around it as well. Anything that touches this area causes a sharp sensation of pain that does not go away.

While Western doctors and researchers continue to learn more about HS, there’s still no definitive cure. Treatment often focuses on managing symptoms through medication, stress reduction, and, in some cases, surgical intervention. For those of us living with it, though, it’s not just about managing symptoms on paper. It’s about waking up every day and finding the strength to deal with what comes next, even when it feels unbearable.

The Silent Struggles of Everyday Life

Living with HS means constant adjustments to things most people take for granted. On tough days, the simplest actions can feel like mountains to climb. For example:

• Getting in and out of bed: The pain of a flare-up can be so intense that shifting positions feels like torture. Some mornings, even sitting up feels like an act of courage. Also, sleep patterns are horrendous, since you never get the opportunity to actually rest due to the pain.

• Going to the bathroom: Flare-ups in sensitive areas can make going to the bathroom a difficult, painful experience you dread. Some people have to change their bandages after every trip to the bathroom. This makes using a public bathroom, including work stalls, a nightmare.

• Brushing your teeth or daily hygiene: Activities that require even the slightest upper body movements, like lifting your arms, can feel overwhelming if your underarms or shoulders are affected.

  
  

  These aren’t just minor inconveniences. When you live with HS, pain becomes a constant companion, and that can wear on your mind and spirit. Remission is possible, but it is not the same for every person. It’s not just the physical hurt that is damaging to us, but also the feeling of being trapped in your body, unable to escape what’s happening.

Finding Light in Small Victories

If you’re reading this and feeling the weight of those challenges, please pause for a moment and remind yourself of this truth: You are incredibly strong, even when you don’t feel like it. Every day that you get out of bed, every moment you push through the discomfort, and every time you choose to care for yourself... even when it feels impossible, that’s strength. There’s no one-size-fits-all path to lifting your mind out of the fog that HS can bring, but here are a few small steps that have helped me (and may help you, too):

1. Celebrate small victories: On days when every movement feels hard, give yourself credit for the little things you accomplish. Did you brush your teeth? Comb your hair? Take a sip of water? Those are wins, and they count.

2. Practice gentle self-care: Self-care doesn’t have to be fancy. Sometimes, it means putting on the comfiest clothes you own, lighting a calming candle, or sitting quietly with a book or music that soothes you.

3. Talk about it: Whether it’s with a trusted friend, family member, or someone like me who understands what living with HS feels like, sharing your story can be healing.

4. Focus on what you can control: HS can be unpredictable, but gentle habits like adjusting your diet, lowering your stress levels, or finding a skincare routine that works for you can help you regain a sense of control in your daily life.

Building a Supportive Community

One of the hardest things about HS is the way it isolates you. It makes you feel like no one understands what you’re going through or what it’s like to live in a body that won’t cooperate with your plans. That’s why I’m opening this space—not just to share my experiences but to hear yours as well. There’s healing power in community. When we talk to each other, when we listen, and when we show up even in small ways, we remind ourselves that we’re not struggling in silence.

An Open Door for You

I want this to be more than just a blog you read and leave behind. I want it to be a space where you feel seen, heard, and understood. Whether you’re newly diagnosed, deep on this HS journey, or supporting someone with the condition, I’d love to hear from you. Here’s how you can connect:

• Comment on this blog and share your story or ask questions.

• Reach out directly if there’s something on your mind. I’m here to listen.

• Suggest topics you’d like me to write about so this space feels as helpful and inclusive as possible.

  
  

  Each conversation and connection we make is a step toward building a community that lifts each other up. Together, we can face the hard days, celebrate the small wins, and remind each other of our resilience.

  
  

  HS doesn’t define who you are. You are more than your pain, your scars, or your struggles. You are capable of hope, healing, and connection. Together, we keep going.

  
  

  With care and courage,

• -Ericka