Mental Health with a Rare Disease

If you are in a crisis or need immediate support, please don’t wait.
Call or text the 988 Suicide & Crisis Lifeline at 988—available 24/7, free and confidential.

If you or someone you know is in immediate danger, please call 911 or go to the nearest emergency room.

Living with a rare disease can bring a unique set of challenges, many of which extend far beyond the physical symptoms. The uncertainty, isolation, and stress that often come with a rare diagnosis can take a real toll on your mental and emotional well-being. It’s okay to acknowledge that this journey is hard. It’s even more important to know that you don’t have to face it alone.

Whether you’ve been recently diagnosed or have been navigating life with a rare disease for years, your mental health matters. In this message, we want to share resources, tips, and support to help you care for your mind as well as your body.

Start here:

• Acknowledge your emotions without judgment – It’s normal to feel overwhelmed, anxious, or frustrated. Allow yourself to process those emotions without judgment. Mental health starts with self-compassion
• Talk to a therapist or mental health professional: Therapists familiar with chronic illness or rare disease can help you manage anxiety, grief, or depression related to your diagnosis. You don’t have to wait for a crisis to reach out.
• Build a support network – Connect with people who understand, family, friends, healthcare professioinals, or whether it’s through a rare disease support group, a peer mentor, or an online community. Shared experiences can ease isolation and help you feel seen.
• Track your emotional well-being – Just like you might track symptoms or medications, journaling or using a mood-tracking app can help you spot emotional patterns, triggers, or progress over time.
•  Practice self-compassion daily – create space for rest and joy – Even during flares or uncertainty, finding small moments for things that bring you comfort – whether that’s music, nature, creativity, or mindfulness – can build emotional resilience.
• Advocate for yourself – Feeling dismissed or misunderstood by others, including doctors, can harm your mental health. Practice communicating your needs clearly and consider bringing an advocate with you to appointments.

You’re not “too emotional.” You’re navigating something incredibly hard. And you’re doing it with courage. Consider attending an IPPF Event

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: “Staying Connected, Even When It’s Hard”