Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections

Once Upon A Gene

ONCE UPON A GENE - EPISODE 242

Choosing Friends as a Rare Disease Parent - Building a Supportive Circle with Genuine Connections

I've been seeing so many online conversations around friendships lately and we've all experienced a ghost ship of friends or people who disappeared or didn't show up for us as we came into the rare disease world. It's an important topic to touch on since so many of us face these friendship challenges. What do we do about it?

EPISODE HIGHLIGHTS

Find your people.

You don't have to let go of old friendships, but it's important to expand your circle to include people who get what life is like for you and your family. Find Facebook groups, explore blogs, reach out to former OUAG guests, or connect with other parents in the waiting room of the doctors offices. Use the power of the internet and social media to find your people.

Remember who you were before rare disease.

It is easy to forget who we were before we were a caretaker. Connecting with close friends to do activities you enjoyed before caretaking was at the center of your purpose can help you grow and keep your essence.

Be intentional.

Think about the friendships you want to cultivate and be very intentional about it. Find the people who get your life and know what it's like, then find the friends you'd connect with if it weren't for rare disease. Be intentional about finding meaningful connections with people you'd be friends with no matter what, even before rare disease.

LINKS & RESOURCES MENTIONED

Learn More and Register for Week in RARE (use code FRIENDOFEFFIE)

https://globalgenes.org/week-in-rare/

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