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TALKING ABOUT HS
Talking About HS: How to Explain Hidradenitis Suppurativa to Others
Living with hidradenitis suppurativa (HS) can be physically and emotionally challenging—and for many people, one of the hardest parts is figuring out how to talk about it.
HS is often misunderstood. Symptoms may affect sensitive areas of the body, and many people have never heard of the condition before. You may worry about how others will react, what to say, or how much to share.
There’s no single “right” way to talk about HS. These conversations are personal, and you are always in control of your story. This page offers guidance to help you feel more confident explaining HS to others and navigating everyday conversations.
Why Talking About HS Can Feel Difficult
Many people with HS find these conversations challenging. You are not alone if you feel unsure or hesitant.
Talking about HS can feel difficult because:
- Symptoms like pain, drainage, or scarring may be hard to describe
- HS is often mistaken for boils, infection, or poor hygiene
- The condition can affect private areas of the body
- You may have experienced misunderstanding or stigma in the past
- You may not have the energy to explain it repeatedly
It’s okay to take your time and decide what feels right for you.
How to Explain HS in Simple Terms
You don’t need a medical explanation to help someone understand HS. Many people find it helpful to keep things simple and clear.
You might say:
- “HS is a chronic skin condition that causes painful lumps under the skin.”
- “Some people think they’re boils, but it’s actually an inflammatory condition.”
- “It’s not contagious and not caused by hygiene.”
- “It comes and goes, and I manage it with my doctor.”
If someone wants to learn more, you can always share additional details or direct them to trusted resources.
Understanding Your Energy: The Spoon Theory
Living with HS can affect your energy level just as much as your physical symptoms. Some days, even simple tasks or conversations can feel overwhelming.
Many people with chronic conditions use something called the Spoon Theory to describe this experience. Imagine that you start each day with a limited number of “spoons,” or units of energy. Every activity—getting dressed, going to work, managing pain, or explaining your condition—uses up a spoon.
For someone living with HS, there may be fewer spoons to start with, especially during a flare. This means you may need to make choices about how you use your energy.
When it comes to talking about HS:
- It’s okay if you don’t have the energy to explain it
- It’s okay to keep conversations short
- It’s okay to say “not right now”
Understanding your own limits can help you communicate more confidently—and protect your well‑being.
Talking to Friends and Family
Opening up to people you trust can help reduce feelings of isolation and build a stronger support system.
You might choose to:
- Share what HS feels like physically and emotionally
- Explain when you may need extra support (during flares, appointments, etc.)
- Let them know how they can help (listening, flexibility, understanding)
Remember, you don’t have to share everything at once. Conversations can happen gradually, over time.
Talking to Health Care Providers
Clear communication with your health care provider is important to receiving an accurate diagnosis and effective treatment.
When talking to a provider, it can help to:
- Describe where symptoms occur and how often they return
- Mention pain, drainage, and scarring
- Explain how HS affects your daily life
- Share your full symptom history, not just what is visible that day
- Bring photos if your symptoms come and go
Being open about your experience can help your provider better understand your condition and tailor your care. If you feel dismissed or unheard, it’s okay to advocate for yourself and ask for further evaluation.
Talking About HS at Work or School
You may need to talk about HS in situations involving:
- Time off for medical appointments
- Managing flares or pain
- Physical limitations or accommodations
You are not required to share every detail. Some people prefer to say:
“I have a chronic medical condition that sometimes requires treatment and flexibility.”
Others may choose to share more depending on their comfort level and environment.
It can help to focus on what you need, such as flexibility or understanding, rather than feeling pressure to explain everything.
Responding to Misunderstanding
Because HS is not widely known, you may encounter confusion or incorrect assumptions from others.
If this happens, you can:
- Gently correct misunderstandings (“It’s not contagious”)
- Share simple facts if you feel comfortable
- Set boundaries if a conversation feels uncomfortable
You are not responsible for educating everyone, and it is okay to protect your energy.
You always have the right to decide what you share—and what you don’t.
You can say:
- “I’d rather not go into detail, but I appreciate your understanding.”
- “I’m not comfortable discussing that right now.”
Protecting your privacy and energy is an important part of living with HS.
You Are in Control of Your Story
Everyone’s experience with HS is different. You may choose to:
- Share openly with some people
- Keep information private in other situations
- Change how you talk about HS over time
There is no right or wrong approach—only what feels best for you.
Support Is Available
Talking about HS may feel easier over time, especially as you build confidence and find supportive people.
Many people find comfort in:
- Connecting with others who understand HS
- Learning more about the condition
- Practicing conversations in a safe setting
The HS Foundation offers resources to help you feel more informed, supported, and confident as you navigate living with HS.
Living with HS?
You don’t have to handle these conversations alone. Take your time, be patient with yourself, and use the resources available to support you.
Explore more information on symptoms, treatment, and support through the HS Foundation website.