Hearing the words hidradenitis suppurativa for the first time can bring many different emotions.

Relief that what you have been experiencing finally has a name.

Confusion about what the diagnosis means.

Fear about what comes next.

Or even frustration because you may have spent months or years trying to get answers.

Wherever you are emotionally, there is something we want you to know:

You do not have to figure everything out today.

Hidradenitis suppurativa, often called HS, is a chronic inflammatory skin condition that can cause painful nodules, abscesses, drainage, tunnels and scarring. HS can also affect much more than the skin. Pain, fatigue, clothing choices, movement, work, relationships, intimacy and emotional well-being can all be affected.

That is why learning to live with HS involves more than learning the name of a medical condition.

It involves learning about your HS.

Start With Understanding

There is a lot of information about HS online, and it can quickly become overwhelming.

Give yourself permission to learn gradually.

Start with the basics. Learn what HS is. Begin noticing your symptoms. Write down questions for your healthcare provider. Keep track of changes you want to discuss at your appointments.

You do not need to become an HS expert overnight.

Build a Healthcare Team You Can Talk To

Finding healthcare professionals who understand HS can make an important difference.

Your care may involve a dermatologist and, depending on your individual needs, other healthcare professionals.

But medical expertise is only one part of good care.

You should also feel that your concerns are heard.

Consider writing down your questions before appointments. Tell your healthcare provider how HS affects your daily life—not only what your skin looks like on the day of the appointment.

Talk about pain.

Talk about drainage.

Talk about fatigue.

Talk about mobility.

Talk about emotional well-being.

Talk about the parts of living with HS that may be difficult to say out loud.

Those things matter, too.

Pay Attention to Your Emotional Health

Living with a chronic condition can be emotionally exhausting.

There may be days when you are frustrated with your body. There may be times when you cancel plans, worry about drainage or odor, feel uncomfortable with intimacy, or simply become tired of thinking about HS.

You deserve support for those experiences, too.

Mental and emotional wellness should be part of the conversation about living well with HS.

Find Community

One of the most powerful moments after an HS diagnosis can be discovering:

There are other people who understand.

You are not the only person who has adjusted the way you sit because of pain.

You are not the only person who has worried about drainage showing through clothing.

You are not the only person who has cancelled plans because of a flare.

And you are not the only person who has smiled and said, “I’m fine,” when you were having a difficult HS day.

Connection does not make HS disappear.

But being understood can make the journey feel less isolating.

Take Your Journey One Step at a Time

There is no single perfect way to live with HS.

Your experience may look different from someone else’s, and your needs may change over time.

Learn.

Ask questions.

Advocate for yourself.

Seek support.

And give yourself room to adjust.

At the International Association of Hidradenitis Suppurativa Network (IAHSN), our goal is to help people affected by HS find education, support, connection and resources throughout their journey.

Your diagnosis may be part of your story.

It does not have to become your entire identity.

Start Here

If you are newly diagnosed with HS, explore IAHSN's resources, programs and community support opportunities created to help you take your next step with greater information and connection.

Educate. Empower. Connect.