Talking about PG

Living with PG can be physically painful and emotionally taxing. It’s not always easy to talk about, but sharing your experience with your healthcare provider, family, and friends you can get the care and support you need. 

Talking to your health care provider 

Be Specific: Describe when the wound started, how it looks, how it feels, and how it has changed over time. 

Track your symptoms: photos and notes about flares and possible triggers can help your provider see the full picture.

Advocate for yourself: PG is rare and often misdiagnosed. If you feel your concerns are not being addressed, you can seek a second opinion.

Join a Support group (link to the Facebook page)

Talking to friends and family 

Explain the basics: It may be helpful to rehearse exactly what you are going to say and decide on specific words or phrases to use, such as “inflammatory” or “I have a rare skin condition where my immune system causes painful wounds”.

Share what helps: Let people know what they can do to support you, whether it be assistance with daily activities, help changing dressings, or just someone to listen. 

Set boundaries: Decide how much detail you’d like to share. Respect your need to keep some things to yourself. 

Talking to your workplace or school 

Know your Rights: You may be entitled to accommodations, like time for wound care or flexibility during flares. 

Keep it Simple: Focus on how PG affects your ability to work or participate, not medical details. 

Mental Health Matters: It’s normal to feel anxious, frustrated, or isolated. If you’re struggling, consider talking to a therapist or counselor. You deserve support for both your physical and emotional health.