Why I Stepped Back From This Community for a Break

I've been a devoted part of this community for many years—as a writer, moderator, and Patient Leadership Council member. I've even been nominated (and was a finalist in two categories) for the Social Health Awards.

In fact, working with all of you has given me such a deep sense of purpose and connection. I am a true believer in the power of visibility and representation; society needs to be hearing directly from the people who experience chronic and terminal illnesses.

Chronic and terminal illness touches my family

I have personally seen the way it shaped my family: My mother has thyroid disease, arthritis, and degenerative disc disease. My father lives with blood cancer and liver disease. And I live with axial spondyloarthritis (and a brand new spinal fracture).

So I'm always thinking about the body, health, disease, and treatment. But there's more: I'm a freelance medical writer (as my job!) because, for some reason, as an incredibly health-anxious human being, I decided to go into health journalism. Not always the best idea!

That said, I spend my time researching diseases and drugs and patient stories and interviewing doctors and making sense of clinical journals. I love it and I am fascinated by it and I care about it. But sometimes I feel a level of burnout that plagues me so much that I have to shut off entirely.

Sometimes I need a break

It's not a lack of empathy, or that I am magically cured of this disease, or that I dislike hearing from all of you. It's that I needed a break from the "Disease World." I needed to stop thinking about it all the time. I needed to stop always writing about complications, the future, risks and the fear and the disappointment and the worry (and on and on). I even needed a break from the positives. I just needed some time to live my life outside of The narrative of the disease, even if the disease was omnipresent.

Who am I? What can I do versus what are my limitations? What did I want that is not associated with my body?

I am someone outside of chronic health issues

I planned a wedding in Sicily to get married and had the best day of my life. I promoted a book that I wrote. I moved houses and states. I travel to my ancestral homeland. I did things people do when they're living their lives. And I try not to let the pain and my mobility issues take up all the space inside my mind. I wanted light to get into the cracks, as Rumi would say.

Right now I'm dealing with a spinal fracture and it has made my body yet again the star of the show. I'm trying to take those previous lessons with me, though: I'm still trying to focus my life on what I can do and what I can achieve and what exists outside of my body's narrative. I think hiatus is a smart idea for anyone who needs to regroup and re-calibrate, both as a person and as someone working with the public.

So, I feel I am back refreshed and with a new sense of purpose and a new way to engage. I feel I am stronger and better able to connect. I feel I have new ideas and new perspectives. I feel I have grown as a person and I want to share what I can with this community.

And most of all, I want to hear from you all.