Posted in Anonymity, Community, Having a Voice

Alone But Not Forgotten

Day in and day out we hear about the big name illnesses.  Those are the life-altering illnesses that receive celebrity endorsements, create foundations, have huge money for research and a community so people don’t feel alone.  What about those illnesses that don’t fall in that category.  This week I watched “Extreme Makeover: Home Edition” featuring a young girl who has an illness that only 25 people in the world have…can you imagine.

During the show, they brought in another child who had the same diagnosis and the bond was immediate.  The relief each of these children felt was palpable.  Feeling like you come from another planet does not aid in creating the fighting attitude to conquer the challenges of a life-altering diagnosis.  It’s when we can say to someone, “This is how I’m feeling” and they can respond honestly “I know how you feel” that we feel understood.

Maybe one of the best things we can do it when we encounter someone with someone with an orphan illness, simply give them the space to share their experience.  This isn’t about solving anything, but giving them the platform to be seen and heard.  It’s a great time to give these individuals and families the opportunity to step out of the shadows.

Illness is lonely enough, and as a pilgrim walking this path can be daunting.  Fortunately, many people with these diagnoses have doctors that can be their Sherpa on this path.  These doctors are often doing research to gain information and in turn create treatment strategies.  We all can use a Sherpa to help us on what is often a long and arduous journey.  Who’s your Sherpa?

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