Voices in the Rare Disease Community: What's Your Story?

Every day, we take in stories from the world around us. We consume them on social media. We read about them in books. We listen to them on podcasts. We recount them to one another. But then there are the stories that change our lives.

If you are affected by a rare disease – perhaps you are a patient, a caregiver, a friend, or loved one – then you may relate to feeling alone on your journey. Many know it can be hard just to find a doctor who has heard of your rare disease, let alone finding other patients or caregivers. That is why rare disease stories are so important for our community.

Why share our stories in the rare disease community?

Sharing how a rare disease impacts our lives can be cathartic for us and a lifeline for someone on a similar journey wondering if there is anyone else in the world like them.

Stories help us process our journey

We all need an outlet for stressors in our lives. And rare disease patients have a LOT of stressors. From long diagnosis journeys, lack of treatment options, insurance nightmares, and few people in our lives who truly understand what we are going through, sharing these experiences can help us process our thoughts and feelings.

Stories bring us together as a community

Shared stories help people all over the world find and connect with others like themselves. Communities big and small, in-person or virtual, become support systems for patients and caregivers who might otherwise never meet someone else coping with their rare disease. Several of our Patient Leaders have reflected on this incredible gift:

• Finding Friendship in the Rare Disease Community
• Why Joining Your Rare Community Is important
• Community Views: We Are Rare but Not Alone

Stories give us hope for the future

Life with a rare disease often means more questions than answers. Reading stories from others who have gone through similar challenges or who are a further along in their patient journey can be informative, reassuring, and, sometimes, hopeful.

Sharing our stories connects us as a community and helps us cope with our own journeys. Check out our stories page to read others' stories and share your own.

Featured stories

Here at RareDisease.net, we welcome stories from anyone affected by a rare disease. Stories are published on our website and may be featured in our weekly newsletter – subscribe now! Here are a few stories submitted by community members:

Self-care Is the Best Care

Simply put, self-care means taking time to do things that will protect your well-being and happiness. It’s those things that will pour into you when you feel depleted, boost your confidence when you are low, and enable you to care for yourself your way...keep reading Self-care Is the Best Care.

You're Just Complicated

Have you ever been told that you are complicated by a medical professional? I have time and time again. My journey started off with migraines back in the 90s... keep reading You're Just Complicated.

Not Medically Fragile

We don’t like anybody who ever says that she is medically fragile, because she’s not. She is just a person with a disability who fights a little harder than others... keep reading Not Medically Fragile.

Tired of Doctors Calling Me Unusual

Medical profession are trained to look at numbers on tests for everything. If your numbers don't fit into a textbook range or they can't somehow document a reason for your pain, well you're screwed, my friend... keep reading Tired of Doctors Calling Me Unusual.

Would you like to read more stories? Are you ready to share your own? Visit our stories page!