PARENTS AS RARE – EPISODE 059
Owning My Story
Adam Johnson’s world was turned upside down when he went from being a healthy 35 year old with an exciting path ahead, to a 35 year old with a rare disease that left him wondering what could have been. It’s his story and he owns it and he adds to it through rare disease advocacy. As a self-proclaimed dadvocate, he learned to own his story through blogging, podcasting and sharing on social media.
In the early stages of his symptom manifestation and diagnostic process, Adam felt alone, as if he were the only person going through a similar struggle. No one he knew, especially at his age, was going through the same experience.
He knew there had to be others and initially used Twitter to turn his hopes of offering support and advocacy into action and connect with others who could support each other- @rarediseasedad was born.
While connecting with people he didn’t know was intriguing, connecting with people he did know was scary because he would have to open up about himself and what he was going through. With each interaction, he hid behind his Twitter handle. With the realization that he was a husband, dad, son, brother, nephew, uncle, cousin, friend, neighbor and acquaintance who happens to have a rare disease, rare disease didn’t define him, but it was a part of him and couldn’t be ignored.
Adding his name to his account was how he decided to move forward, to be transparent and vulnerable in hopes that it would help someone else along the way. It was time to own his story and his advocacy journey has only further advanced his story into this podcast- Parents As Rare. Adam hopes to continue building a community of parents who are working through a rare disease, to connect, support and provide comfort for others.