Community Views: What Makes Us Unique

Living with a rare disease can sometimes feel all-consuming. It can take up so much of your time and mental bandwidth. But it is far from everything you are.

To get people talking about this topic, we reached out on the RareDisease.net Facebook community. We asked, “Other than your condition, what makes you unique?”

Almost 70 people responded. Here are just a few of the things that make each person living with a rare disease one of a kind.

Willingness and desire to help

The most common response was that people really want to do good things for others. This could look like everyday acts of kindness or like helping specific people who face the same diagnosis. Some people in the community are making a difference through advocacy or disease research.

“I want to help others every way I can.”

“My ability to push through it and still do good for others.”

“I participated in a clinical research trial using a special camera called PET and a radioactive chemical. Yes, it is good to help research studies.”

“I testified before a legislative committee in favor of legalization of cannabis for adult recreational purposes.”

Empathy

Going through difficulty makes you not only stronger but also much more empathetic toward other people. Many people in the community shared that living with a rare disease has opened their hearts up to new levels of compassion and understanding. They feel this way toward others living with similar diseases as well as people in general.

“Strongly empathetic toward others.”

“I am an empath. I am uniquely and wonderfully made.”

“My empath abilities to see and feel things for what they truly are.”

Resilience

Several people shared that as they gain more experience living with their diagnosis, they recognize that they are more resilient than they thought. This is an empowering belief that can help them continue to stay strong and brave in times of difficulty.

“My body's resiliency through times where I start to think I may die, but amazingly I weather the storm.”

“My resilience.”

Particular interests

Some respondents shared that they value specific passions, quirks, hobbies, or skills that make them unique. They have learned to enjoy how they spend their time and appreciate how unique they are just for being themselves.

“I went looking for Bigfoot.”

“My music knowledge!”

Way of thinking

A few people in the rare disease community pointed out that they have a unique way of seeing things. They bring optimism to their everyday life, and they are able to think positive thoughts along the way. One person mentioned that their confidence sets them apart, enabling them to keep going no matter what life throws at them.

“My optimism!”

“My confidence.”

We want to say thank you to everyone who participated in the conversation on Facebook! It is so helpful to learn about so many different facets of this community.