Living with HS: How to Stay Positive Despite Challenges

Living with Hidradenitis Suppurativa (HS) is not easy. The condition is painful, unpredictable, and often misunderstood—even by healthcare professionals. Flare-ups can strike without warning, bringing discomfort, embarrassment, and emotional exhaustion. It’s more than just a skin disease; it affects how you move, dress, work, and interact with others. For many, HS also brings loneliness, self-doubt, and the constant weight of managing a condition that doesn’t have a quick fix.

And yet, countless people with HS find ways to live full, joyful lives. They learn how to adapt, take control of their health, and even thrive in the face of ongoing challenges. Staying positive with HS isn’t about pretending everything is fine or ignoring pain—it’s about finding light in the small victories, building resilience, and discovering new ways to care for your body and mind.

Positivity doesn’t mean toxic optimism. It means accepting the hard days while also recognizing the strength it takes to keep going. It means building support systems, seeking out treatments that work for your unique needs, and allowing yourself to feel hope—even when the road feels long.

In this article, we’ll explore practical ways to stay positive while living with HS. We’ll talk about:

How to cope with physical symptoms while preserving your emotional well-being
Why support systems and community make a difference
Daily habits and mindset shifts that can improve your quality of life
How to find purpose and peace even when HS feels overwhelming

You are more than your skin. While HS may always be a part of your life, it doesn’t have to define who you are. With compassion, patience, and the right tools, it’s possible to reclaim joy, build confidence, and move forward—one day at a time.

Coping with Physical Symptoms While Preserving Your Emotional Well-Being

When you’re living with Hidradenitis Suppurativa (HS), the physical pain is undeniable—but it’s often the emotional toll that feels just as heavy, if not heavier. Painful lesions, uncomfortable dressings, and constant drainage can wear you down physically, but it’s the frustration, isolation, and sadness that often settle in quietly over time. Learning how to care for your body while protecting your mental and emotional health is key to living well with HS.

Here’s how you can cope with the physical symptoms while nurturing your emotional resilience:

1. Create a Personalized Care Routine

Managing the physical symptoms of HS starts with a care routine that works for your specific needs. Having a consistent routine can give you a sense of control and help reduce flare-ups, making daily life more manageable.

Use gentle, fragrance-free cleansers and keep affected areas clean and dry.
Apply barrier creams to reduce friction and use breathable clothing to minimize irritation.
Keep a small HS care kit with dressings, wipes, and ointments close by, whether at home or on the go.
If you’re dealing with drainage, wear dark clothing or carry backup supplies to avoid anxiety about stains or odor.

Even small rituals like changing dressings or applying warm compresses can become calming when you approach them with care and self-kindness.

2. Allow Yourself to Rest Without Guilt

HS flares can be exhausting. There may be days when movement is painful, energy is low, and even getting out of bed feels like a struggle. Allowing yourself to rest during those times is not a failure—it’s a form of self-preservation.

Listen to your body. If you need to cancel plans, say no to obligations, or ask for help, that’s okay. Rest is healing, not weakness.

3. Practice Self-Compassion

When your body is hurting, it’s easy to slip into a spiral of self-blame or anger. You might find yourself thinking, “Why can’t I just be normal?” or “I hate my body for doing this.” These thoughts are common, but harmful.

Practicing self-compassion means shifting your inner voice from criticism to care. Try talking to yourself as you would to a friend who’s struggling. Remind yourself that you are doing your best, and that what you’re feeling is valid. You didn’t cause HS, and you’re not weak because of it.

4. Watch for Signs of Mental Fatigue

Living with chronic pain can lead to mental fatigue, also known as emotional burnout. You might feel irritable, hopeless, or like you’re stuck in survival mode. Pay attention to the signs:

Loss of interest in hobbies or people you love
Trouble sleeping or sleeping too much
Constant feelings of frustration or sadness
Isolation from friends and family

If you recognize these signs, it’s time to check in with a mental health professional. A therapist who understands chronic illness can help you process emotions and develop strategies to cope.

Why Support Systems and Community Make a Difference

HS is an isolating condition, but it doesn’t have to be faced alone. Whether you’ve just been diagnosed or you’ve lived with HS for years, having a support system can drastically change how you experience and manage the condition. Connecting with others—friends, family, healthcare providers, or fellow HS warriors—can offer not just practical help, but emotional relief.

1. The Power of Being Understood

One of the hardest parts of HS is feeling misunderstood. Because the disease affects sensitive areas of the body and isn’t widely talked about, it can feel like no one truly “gets it.” That’s where support groups and HS communities come in.

Whether online or in person, support groups offer:

A place to vent without judgment
Tips and tricks from others who’ve been through the same struggles
Encouragement and validation when you’re feeling down
A reminder that you’re not alone

You don’t have to explain what it feels like to dress around bandages or fear flare-ups during special events—others in the HS community already know. That mutual understanding can be incredibly healing.

2. Finding the Right People in Your Life

Your support system can also include close friends, family members, a partner, or even a trusted coworker. These people may not experience HS firsthand, but they care about you and want to help.

Here’s how to build a stronger support circle:

Be honest about your needs. Tell them when you’re in pain, need a break, or just need someone to listen.
Educate them. Share articles, videos, or your own story so they understand what HS is and how it affects you.
Ask for specific help. Whether it’s picking up groceries or driving you to a doctor’s appointment, people often want to help—they just don’t know how unless you tell them.

The right people won’t judge you or make you feel like a burden. They’ll stand with you.

3. Talk to a Therapist or Counselor

Sometimes, support from friends and family isn’t enough, especially when you’re dealing with depression, anxiety, or past trauma related to HS. Speaking with a mental health professional who understands chronic illness can be a powerful tool in your healing journey.

Therapy can help you:

Process the emotions tied to HS and body image
Cope with stress, grief, or relationship struggles
Rebuild self-worth and confidence
Develop practical coping mechanisms

If affordability is a concern, consider looking for community clinics, sliding-scale providers, or virtual therapy platforms.

4. Online Communities Offer Connection and Safety

Online forums, Facebook groups, Reddit threads, and dedicated HS communities like MyHSteam and Inspire allow people with HS to connect 24/7. These platforms are particularly helpful if in-person support isn’t available.

Benefits of online communities:

Accessibility, especially for those with limited mobility
Anonymity, which can make it easier to open up
Real-time advice and encouragement
Diverse perspectives from people around the world

Just be sure to avoid misinformation and seek out moderated groups with clear guidelines to maintain a positive environment.

5. Let Go of Shame

One of the greatest barriers to seeking support is shame. HS affects intimate parts of the body, produces odors and drainage, and can leave permanent scarring. It’s no wonder people want to hide it. But shame isolates—and connection heals.

You are not disgusting. You are not broken. You are living with a medical condition that deserves care and understanding.

Speaking about your experience—even just to one trusted person—can help loosen the grip of shame. Over time, sharing your truth allows others to see you as you are: resilient, courageous, and worthy of support.

In Summary

Coping with HS takes strength—physically, emotionally, and mentally. While the symptoms can be overwhelming, developing a care routine, showing yourself compassion, and resting when needed helps reduce the burden. Just as important is surrounding yourself with support. Whether it’s an online group, a friend who checks in, or a therapist who listens, the people in your corner can remind you that you’re never alone.

With patience, connection, and the right tools, it is possible to find moments of peace, relief, and even joy—despite the challenges HS may bring.

Daily Habits and Mindset Shifts That Can Improve Your Quality of Life

Living with Hidradenitis Suppurativa (HS) often means juggling pain, unpredictability, and emotional fatigue. But within the discomfort and frustration, there is room for healing—not necessarily curing the disease, but building a life where HS no longer defines you. Creating meaningful daily habits and adopting gentle mindset shifts can dramatically improve how you experience each day. These small, intentional changes don’t erase HS, but they can give you a sense of empowerment and joy, even amid challenges.

1. Start Your Day with Intention

How you begin your day can set the tone for everything that follows. When you live with a chronic condition like HS, mornings can feel daunting—especially after a painful night. Instead of rushing into stress, try beginning with a moment of quiet intention:

Take a few deep breaths before getting out of bed.
Stretch gently to ease any stiffness or soreness.
Repeat a grounding affirmation like: “I am doing the best I can with what I have today.”

This slow, mindful start reminds you that you’re in control of how you approach the day, even if you can’t control your symptoms.

2. Prioritize Gentle Movement

Movement may feel counterintuitive when you’re in pain, but regular gentle activity can reduce inflammation, improve circulation, and support emotional well-being. You don’t have to run marathons—simple, restorative movement can do wonders.

Consider:

Walking short distances or around the house
Yoga or stretching routines designed for chronic pain
Chair exercises if mobility is limited
Swimming or water aerobics to ease joint strain

Find a routine that feels supportive, not punishing. Even a 10-minute stretch session can ease both body and mind.

3. Nourish Your Body With Compassion

There’s no one-size-fits-all HS diet, but many people report feeling better when they avoid inflammation-triggering foods or incorporate more whole, nourishing meals. Rather than obsessing over restriction, focus on how food makes you feel.

Tips:

Eat anti-inflammatory foods like berries, leafy greens, fatty fish, and whole grains.
Stay hydrated to support skin and tissue health.
Limit processed foods, sugar, and dairy if they seem to trigger flares.
Keep snacks on hand for days when cooking is hard—being kind to yourself includes convenience.

Most importantly, release the guilt around food choices. Some days, you may just eat what’s easy—and that’s okay.

4. Create a Care Space in Your Home

Having a designated space for healing—even a small corner—can remind you that your well-being matters. Stock it with items that soothe you physically and emotionally:

Soft blankets, heating pads, or cold packs
Wound care supplies for easy access
Calming items like a candle, essential oil diffuser, or cozy lighting
A journal or coloring book for mindfulness

Let this space serve as a daily reminder that you are allowed to rest and receive care—especially from yourself.

5. Set Boundaries and Say “No” Without Guilt

Living with HS means energy is a limited resource. Learning to say “no” without guilt can help preserve that energy for things that truly matter.

Don’t feel obligated to explain or justify why you need to cancel plans or skip an event.
Practice responses like: “I’d love to, but I’m taking care of my health today.”
Remember: protecting your time and energy is not selfish—it’s essential.

Boundaries are a form of self-respect, and setting them creates space for healing.

6. Celebrate Tiny Wins

When living with a chronic illness, progress can feel slow. But every time you care for your wounds, show up to a doctor’s appointment, or simply get through the day, that is a victory.

Track your small successes:

“I walked around the block.”
“I took a shower even though it hurt.”
“I rested when I needed to.”

These tiny acts of resilience build strength over time. Celebrate them.

How to Find Purpose and Peace Even When HS Feels Overwhelming

HS can feel like it takes so much from you—your comfort, your energy, your confidence. But despite everything it challenges you with, it doesn’t have to take your sense of purpose or your ability to feel peace. Finding meaning in the everyday, connecting with your values, and nurturing your inner world can help you live fully, even in the presence of pain.

1. Redefine What Purpose Means to You

We often think of purpose as a big, lofty thing—career goals, changing the world, achieving milestones. But when you live with HS, your sense of purpose may shift. And that’s okay.

Purpose can be found in:

Helping others by sharing your HS journey
Being present for loved ones
Creating art, writing, or storytelling
Taking care of a pet or a garden
Simply getting through a hard day with grace

You don’t have to be “productive” to have purpose. You’re worthy just as you are, and your existence has meaning.

2. Engage in Joyful Distraction

Distraction doesn’t mean denial—it’s a way to refocus energy on things that uplift you. Engaging in hobbies or creative outlets helps you reconnect with your identity outside of your illness.

Try:

Reading fiction or listening to audiobooks
Painting, crafting, or knitting
Playing video games, puzzles, or mobile games
Watching comedy or feel-good shows

Let joy be part of your healing. It’s okay to laugh, to feel light, even when things are hard.

3. Use Mindfulness to Ground Yourself

When the pain or emotional overwhelm of HS becomes intense, mindfulness can be a tool for grounding. It won’t make the symptoms go away, but it can help you stay present and calm in the moment.

Mindfulness practices:

Deep breathing: Inhale for four counts, hold for four, exhale for six.
Body scans: Gently notice where tension lives and soften it with intention.
Guided meditations: Use free apps like Insight Timer or Calm.
Gratitude journaling: Write three small things that went okay each day.

Mindfulness is about being gentle with what is, rather than fighting what you can’t control.

4. Connect With Others Through Your Story

Sharing your HS story—whether online, with a friend, or in a support group—can be incredibly freeing. It reminds you that you’re not alone and helps others feel less isolated, too.

You don’t have to share every detail. Even simply saying “I have a chronic condition, and today was hard” is a brave act. Vulnerability fosters connection, and connection fosters hope.

5. **Focus on What You Can Control**

So much of HS feels out of your hands. But there are still things you can choose:

How you speak to yourself
When you rest and when you ask for help
Who you let into your circle
The habits you build slowly, with care

These choices give you back a sense of agency—something chronic illness often tries to steal.

6. Embrace Imperfection and Grace

There will be messy days. Days where you feel angry, sad, or completely defeated. Let them come. Let them pass. You don’t have to be endlessly positive to be resilient.

Peace doesn’t mean perfection—it means accepting where you are while holding space for where you’re going. You are allowed to have bad days. You are allowed to be tired. And you are allowed to keep going, gently, with compassion.

In Closing

HS is tough. It affects your body, your confidence, and your sense of stability. But within that struggle, there is still room to feel strong, purposeful, and whole. You can build a life that honors your limits while expanding your joy. You can build a mindset that chooses grace over guilt and connection over isolation.

With daily care, honest reflection, and medical support, life with HS can be one filled not just with survival—but with peace, growth, and unexpected beauty.