There’s the family you’re born with, and there’s the family you choose
… is a comforting re-framing for people who have experienced loss, grief, or estrangement. And it’s true, we can choose our families.
Friends and neighbors can become woven into our lives in beautiful ways. For chronically ill people, it’s less about choosing people to replace the family you’re born with and more about growing it. There’s the family you’re born with, the family you build, and then there’s the family you collect. And sometimes, it’s all of the above.
Chronic illness is a disruptor.
Your life has to bend and stretch to adapt to an ever-changing constellation of symptoms and limitations. Your routine shifts as your functioning shifts. You learn a new language of medical terms and jargon. You spend hours scouring the internet and social media for insight into why and how and what is happening to you. It is often there, in those desperate moments of searching, where you find it – your community.
You won’t know it at first. You’ll dip a toe in tepidly.
Do these people get it? Do they actually understand what I’m going through?
Recognition sets in.
Familiarity with the stories and the frustrations, things you wouldn’t have understood before are now resonating. You feel heard, understood, seen. Even if you are just observing, you feel seen. There is immense relief of not having to showcase your symptoms in desperation to be believed. The burden of explaining the unexplainable is alleviated. They get it. They know it. They live it.
This is where you find the family you collect. People who will support you and understand what you’re experiencing. People who understand the grief of chronic illness, the confusion and frustration and anger of it. Who understand the unique challenges of surviving in a world that doesn’t always believe or understand. A world that would prefer for us to stay in the shadows.
We are a family.
An addition to the family you were born with and the family you built. Your chronic illness family. We share an experience none of us asked for or even knew was possible.
We are community.
And in this community we support, we guide, we learn and we listen. And we refuse to stay in the shadows. Our voices and our experiences need to be understood by those outside of our community. By our families, our doctors, our schools and places of work.
Together, we are powerful and a force that will not be ignored. Our community deserves dignity and recognition and treatment and we won’t stop until every person with a chronic and post viral illness has all of the above.
– Gretchen L. Kelly for Long Covid Families
We know how it feels