For many people, the holidays are portrayed as a season of joy, connection, and celebration. But for individuals living with Hidradenitis Suppurativa (HS), the holidays can stir up something very different—a deep sense of grief, loss, and emotional weight that often goes unseen and unspoken.

If the holidays feel heavier for you, you are not alone—and you are not failing the season.

The Invisible Grief of Living with HS

Grief isn’t only about death. For people living with HS, grief can be ongoing and layered. It may include grief for:

• The body you once had or hoped to have

• The ease of attending gatherings without pain, fear, or preparation

• Missed traditions, canceled plans, or altered celebrations

• Feeling misunderstood, judged, or minimized

• Lost energy, sleep, or emotional capacity

This kind of grief is often invisible—and because it doesn’t always have a clear beginning or end, it can resurface powerfully during the holidays.

Why the Holidays Intensify Grief

The holiday season has a way of magnifying emotions, especially for those living with chronic illness.

1. Heightened Expectations
There’s often pressure to be cheerful, social, and present—regardless of pain, flares, or exhaustion. When your body can’t meet those expectations, grief can surface.

2. Comparison and Isolation
Seeing others celebrate freely can highlight what HS has taken or changed. Even when surrounded by people, individuals with HS may feel deeply alone.

3. Physical and Emotional Fatigue
Cold weather, disrupted routines, travel, and stress can worsen HS symptoms, leaving little room for emotional resilience.

4. Unacknowledged Loss
Because HS-related grief is rarely recognized by others, it often goes unvalidated—making the emotional load feel heavier and more isolating.

You Can Hold Grief and Still Belong

It’s important to know this: You don’t have to choose between honoring your grief and participating in the season. Both can exist at the same time.

Grief doesn’t mean you’re ungrateful.
Rest doesn’t mean you’re disengaged.
Setting boundaries doesn’t mean you don’t care.

Your experience is real, even if it looks different from those around you.

Gentle Ways to Support Yourself This Season

There is no “right” way to move through the holidays with HS—but here are a few compassionate practices that may help:

• Name your grief. Acknowledge what you’re missing or mourning—without judgment.

• Redefine celebration. Smaller, quieter moments count. Comfort matters more than tradition.

• Set boundaries without apology. Protect your energy, your body, and your peace.

• Create moments of grounding. Gentle rituals, warm baths, journaling, or quiet reflection can help soothe both body and mind.

• Reach for support. You deserve to be seen and understood—especially during this season.

A Message from IAHSN

At IAHSN, we recognize that the holidays can be emotionally complex for people living with HS. Grief, loss, and resilience often walk side by side—and all are valid.

If this season feels heavy, please know:
You are not weak.
You are not alone.
And your experience matters.

We are holding space for you—this season and beyond.