Living with hidradenitis suppurativa (HS) may change your holidays, but you can still have enjoyable and meaningful celebrations. Although HS may make some holiday traditions challenging, it doesn't mean you can't enjoy connecting with friends and family during the holiday season. By communicating your limitations due to HS, being flexible, and adjusting your expectations, you can help make sure the holidays are happy and memorable.

Communicate Your Needs

Let your loved ones know that connecting with them over the holidays is as important as ever to you, but hidradenitis suppurativa is making it hard to plan as usual due to significant pain or mobility constraints caused by lesions. Stress can also trigger HS flares, so you need to put your health first or risk worsening your condition.

• Don't be afraid to say no.
• It can help to use direct "I" statements. For instance, "I am not feeling well enough to host this year" is better than "Having everyone over is just too stressful." Communicating in this way makes your needs clear without making others feel accused or burdensome.
• Even if you usually maintain healthy boundaries, the holidays are a time when they may be tested. If a friend or family member tries to make you feel guilty for setting your boundaries, gently remind them that HS doesn't take the holidays off, as much as you wish it did.

Be Flexible

Instead of saying "no," say "yes" to something else. If a family tradition no longer works for you since you developed HS, it may be time to suggest an update.

• If you can't travel as usual, consider offering to host. Ask others to bring potluck dishes and help clean up so you don't wind up overdoing it.
• If you usually host the gathering but can't do it this year, encourage someone else to host instead. They may be delighted to welcome everyone to their home for a change.
• If you always bring a beloved dish, pass the treasured recipe on to a loved one like you would a family heirloom, or shine the limelight on another chef in the family and invite them to bring their favorite dish.
• If you can't bring yourself to give up the party, think of ways to save time and energy. Use paper plates, plastic flatware, and disposable tablecloths for easy cleanup. Make decorating (or de-decorating) part of the event and get everyone to help. Plan a low-impact meal such as a stew that simmers all day in the crock pot with little prep work or tending.

If it's just not possible to get together in one place this year, consider using a video chat service such as Skype, Zoom, or FaceTime to have a special holiday call on a smartphone or laptop. During a video chat, you can:

• Watch family open gifts
• Have them show you the decorations around the house
• Read a holiday story or poem to the children
  Sing favorite holiday songs together

Adjust Your Expectations

Even without a chronic illness like HS, holidays often come with high expectations that lead to disappointment and stress. Letting go of the illusion of a "perfect" holiday can help you keep expectations realistic and focus on what's most important about the holidays. For many people, that means connecting with loved ones, being thankful for what you have, and finding hope for the new year.

Here are some mindful tips from Johns Hopkins Medicine for adjusting holiday expectations:

• Accept that your holidays won't be perfect and will be different from celebrations in years past.
• Focus on what really counts. Find things to be grateful for and look for new ways to connect with loved ones.
• If you get into a conflict with someone over the holidays, take a few breaths before you react. Try to stay compassionate and react with kindness.
• As you reflect on last year, be kind to yourself and let go of any negativity. As you look forward to next year, make smaller, gradual resolutions rather than huge goals that will be difficult to achieve.

During the holidays and year-round, the members of myHSteam are here for each other. Joining myHSteam means gaining a support group of thousands of others with hidradenitis suppurativa who understand exactly what you're going through.

Here are some conversations from myHSteam members about navigating the holiday season with HS:

• "I am in the midst of a terrible outbreak. Supposed to go away for holiday but not sure now if I can. So frustrating."
• "Ugh, forgot to bring in back up pants and underwear to work, and of course had a massive bleed and had to go home. Now I’m afraid to travel. Any ideas for protection?"
• "As most know my stress only causes my HS to be worse. My family and living conditions are the main cause of my stress. I need to spend some time around people who bring me some peace & comfort."

How do you celebrate the holidays while managing HS? Share in the comments below or post on myHSteam.