Supporting Someone with LS – A Guide for Partners and Carers

When someone you love is living with Lichen Sclerosus, it can be hard to know how to help. You may not have heard of the condition before. You might feel helpless watching them struggle. Or you might be worried about saying or doing the wrong thing.

This chapter is here to support you — the partner, friend, family member, or caregiver — so you can show up with empathy, compassion, and understanding. Because the truth is, support doesn’t always mean fixing. Sometimes it means listening, learning, and being present.

What LS Feels Like (From the Inside)

To understand how to help, it helps to understand what LS can feel like for the person living with it:

• Chronic discomfort (itching, burning, soreness)
• Embarrassment or shame about their body
• Fear of flare-ups, pain, or progression
• Anxiety around intimacy or medical exams
• Frustration with being dismissed or misdiagnosed

LS is not just a physical condition — it affects confidence, sexuality, mental health, and relationships.

Ways You Can Offer Meaningful Support

1. Learn About the Condition
   Take the time to read reliable resources (like this book). Understanding the basics shows you care — and helps reduce the emotional load on your loved one to explain everything.
2. Ask What They Need — Then Listen
   Try questions like:

• “Is there anything that makes things easier for you during a flare-up?”
• “Would you like to talk about it, or just have company right now?”
• “Is it okay if I ask questions, or would you prefer space today?”

Let them lead. Everyone’s comfort levels are different.

3. Support Without Pressure
   Your loved one may need time to navigate how LS affects their body, sexuality, and confidence. Respect their pace. Never pressure them into intimacy, activities, or conversations they’re not ready for.
4. Be Patient During Flare-Ups
   Offer practical help — like making a soothing bath, picking up prescriptions, or simply sitting with them in quiet support. A flare-up isn’t their fault, and it’s not personal.
5. Acknowledge, Don’t Minimise
   Instead of saying, “It’s not that bad” or “At least it’s not cancer,” try:

• “That sounds so hard — I’m here with you.”
• “I can’t imagine how uncomfortable that must feel. What would help right now?”

Empathy builds trust. Dismissiveness erodes it.

6. Encourage Medical Support Without Pushing
   If your loved one is struggling to seek treatment or follow up with doctors, gently offer support:

• “Would it help if I came with you to the appointment?”
• “You deserve relief — maybe it’s time for another opinion.”

Supporting Intimacy

If you’re a romantic or sexual partner:

• Prioritise communication over assumptions
• Be open to non-sexual closeness (touch, cuddling, shared rituals)
• Explore new ways to experience pleasure together — without pressure or shame

LS may change how intimacy looks, but it doesn’t have to eliminate it.

Taking Care of Yourself Too

Caring for someone with a chronic condition can be emotionally taxing. Make sure you:

• Have space to express your own feelings
• Seek support if needed (therapy, peer groups, or reading)
• Respect your own limits while offering care

Support doesn’t mean self-sacrifice. It means compassion — for both of you.

You Make a Difference

Your presence, patience, and willingness to learn mean more than you probably realise. You don’t have to get it perfect. Just showing up with an open heart is enough.

In the next and final chapter, we’ll bring this journey full circle — with a letter of hope for everyone living with Lichen Sclerosus.