Talking about HS

How to Talk to Your Provider about HS

You may not be excited to bring up your HS to your provider. After all, it’s not like you’re describing a sore back. It’s important to share what’s happening with your doctor. Sometimes people are embarrassed to bring up the pain, itch, drainage, or odor they experience.  These HS symptoms can impact your quality of life, sexual function, relationships or ability to go to work or school.

When you do meet with your provider, be open and direct. Your clinician can’t know if you aren’t sleeping, have pain, or feel depressed. If you explain how you’re feeling, but you don’t feel like your concerns are being heard or validated, then seek care from a provider who specializes in HS. You want a provider who will listen to your concerns and discuss a plan for addressing it.

Before you go to the doctor, take a thorough inventory of your HS symptoms. Keep track of what makes it worse or better. Time can be limited at an appointment, so use it wisely. Before your appointment, write yourself notes about what you want to say and questions you want to ask. During the appointment, write down notes if your clinician isn’t writing information down for you. Consider bringing a family member or friend to support you and be a second set of ears. 

How to Talk to Your Friends and Family about HS

When you are experiencing HS, communicating with family and friends can be difficult and challenging. Even the most caring relative or friend may offer a “helpful” suggestion that will appear wildly insensitive to you. Here are some tips for talking with family and friends, if you decide to do so.

  • Decide how much detail you want to share. Respect your need to keep some things to yourself.
  • It may help to rehearse exactly what you are going to say. Decide on specific words or phrases to use, such as ”inflammatory” or “I have a chronic skin condition that can be unpredictable and impact my ability to do everyday activities.”
  • Pick a time to talk when people are not rushed or distracted. Make sure it is a private place where you won’t feel embarrassed to show emotion.
  • Explain that HS is not rare. About 1-2% of people in the US have HS.
  • Let them know how they can support you—whether you want questions, help, etc.
  • Explain that you may need a break from events, and that it isn’t about them—it’s about taking care of yourself.
  • Tell them that you will share results about a treatment or procedure when you feel up to it, and not to ask about treatment results, since it can be frustrating to be asked frequently.

Tips for Friends and Family of Someone with HS

When someone you care about has HS, it is tempting to ask questions and offer suggestions. Instead, it’s important to respect what the person with HS needs and wants. Here are some tips for talking with someone who has HS, if you decide to do so.

What to say:

  • The best thing you can do is let your friends know that you care.
  • Do your research. Read up about HS, and possibly treatments, so that you are informed when your friend needs to talk.
  • Act interested. Some people don’t want to talk about how HS impacts them, but some do. Let them know you’re available if they want to talk.
  • Ask them what they need. They may also appreciate if you ask them what you could do or say to help them.
  • Attend appointments with them. You can offer to go to an appointment with them – you might stay in the waiting room or come into the appointment with them. But the offer lets them know how committed you are to supporting them.
  • Offer to be a wellness buddy. Sometimes changes in diet or exercise can make treatments more effective. If you know they are trying to make a change, you could offer to join them because it would help you achieve your personal wellness goals too.

What not to say:

  • Don’t tell them to relax. Comments such as “just relax” create even more stress.
  • Don’t minimize the pain or the problem. You can’t experience what they are experiencing. These comments make people feel badly.
  • Don’t say there are worse things that could happen. Who is the final authority on what is the “worst” thing that could happen to someone? Different people react to different life experiences in different ways.
  • Don’t ask why they are not trying a certain treatment. Because decisions on treatment are complex and personal.
  • Don’t gossip about your friend’s condition. For some, HS is a very private matter, which is why you should respect your friend’s privacy.
  • Don’t be crude. Don’t make crude jokes about your friend’s condition – these are not funny, and they only irritate your friends.
  • Don’t ask whose “fault” it is. HS is not anyone’s fault. Just because a friend has told you he or she has HS does not mean he or she wants to discuss the details.