Staying Connected, Even When It’s Hard

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Living with pemphigus or pemphigoid can be isolating, especially when symptoms like pain, fatigue, or visible flares make it hard to socialize or keep up with your usual routine. It’s understandable if you’ve pulled back from friends, family, or activities you once enjoyed.

But connection matters. Whether it’s a quick text, a virtual chat, or a heartfelt conversation with someone who truly gets it, staying connected – even in small ways – can have a big impact on your emotional well-being.

In this message, we’ll share a few simple ways to maintain and rebuild meaningful connections, even on the hardest days. Because you are not alone and you deserve support that makes you feel seen, heard, and valued.

Ways to stay connected:

• Be Honest About How You’re Feeling – Let your loved ones know when you’re having a tough day. A simple “I’m not up for a long talk, but I’d love a quick check-in” keeps the lines of communication open without adding pressure.
• Use Technology to Stay Close – Video chats, voice messages, and even group texts can help you feel involved when going out isn’t possible. Virtual support groups can also connect you with others who understand life with pemphigus or pemphigoid.
• Pace Yourself Socially – It’s okay to say no when your body needs rest. Prioritize the connections that feel meaningful and energizing rather than draining. Even short, positive interactions can make a big difference.
• Lean on Peer Support – Talking with someone who has walked a similar path can ease loneliness and help you feel seen. IPPF’s Peer Coach Program or support groups offer safe spaces to share and learn from others.
• Reconnect in Small, Low-Energy Ways – Send a card, share a favorite memory, or comment on a friend’s post.These small acts keep you engaged and help others know you still care, even if you’re not always able to show up in big ways.

You don’t have to go through this alone. Here are some resources to find additional information and support:

• Mental Health America – Living with Chronic Illness: mhanational.org/chronic-illness
  • Offers information on how chronic health conditions affect mental health and provides tools for coping with anxiety, depression, and stress
• National Alliance on Mental Illness (NAMI): nami.org
  • Find free support groups, education, and a helpline for people managing mental health challenges—including those with chronic or rare diseases.
• Psychology Today – Find a Therapist: psychologytoday.com/us/therapists
  • Use your zip code to search for therapists experienced in chronic illness, trauma, anxiety, or grief. Many offer telehealth appointments.
• Rare Disease Mental Health Resource Hub – NORD: rarediseases.org/mental-health
  • A hub created specifically for rare disease patients and caregivers, with articles, webinars, and personal stories focused on mental and emotional well-being.

Next Time: “Travel Tips for People with Pemphigus or Pemphigoid”