Part 1 of 2 “I can’t, but thanks for the invite.” The sentence echos on my lips, spoken to more people than I remember. I don’t know about you, but I don’t like to say no. I thrive on adventure and exploration. I’m a social butterfly.
And yet, I’ve said so many no’s I never wanted to. I wasn’t always this way. But when I first got sick as a young teen, I watched as “out of sight, out of mind” became a reality in my life. Friends slowly melted away.
Part of it was because my lifestyle changed. My friends were going to dances and sports games. My community was gathered at church potlucks. But I lay in bed, counting the dots on the ceiling, wrapped in my yellow-y cotton blanket, straining to hear my family’s footsteps and conversation.
Part of the friendships disappearing simply came down to a difference in experiences. Chronic illness changed my priorities and my perspective on life. I didn’t care so much about grades when I was fighting for my life, and it became increasingly challenging to connect with my peers even when our paths crossed.
The Reality Is, We Are Not Alone
After nine lonely months staring at the ceiling, I needed to change tactics. Maybe my local community wasn’t coming to me and I wasn’t able to go to them. But surely someone somewhere had similar experiences. Surely I wasn’t the only teenager with a chronic illness!
I started to reach out online — on platforms very similar to TheMighty. Soon people started saying “Hey, this is wild, but . . .” and stories began to show up in my inbox. It was amazing. The more I shared my story, the more others shared their stories, and before we knew it we didn’t feel so alone anymore.
I remember looking in my chronically- ill friend Mindy’s blue eyes, and in that moment we both felt seen. More than that, we both knew someone understood. Truly understood. It was — is — incredible. As this realization began to sink in, I did something a little . . . outrageous.
I got some friends together, and we put together an online conference (before COVID made them cool). A teenager in her bedroom — sounds like a fun little project, right? But so many people with chronic illnesses I met were lonely and desperate for connection. Many more than I ever realized.
Hundreds of people registered to attend that first event. Watching the live chat was a healing balm to my heart as I saw chronic illness warriors interact with each other, cheer for each other, and comfort each other. As the conference came to a close, I hastily put together an online forum because none of us wanted the connection to end. Seven conferences and thousands of chronic illness warriors later, that chat has grown into a community of people who understand.
What a beautiful thing! People who know exactly what it’s like to be passed from doctor to doctor. People who have turned down invitations, sat on the sidelines, and needed help grocery shopping. People who have felt the shame, fear, anger, and grief. People who have stared at those dots on the ceiling day after day, wondering if they’ll ever get to start a career, be a parent, or even just walk.
I longed for such a community during so many lonely nights of painsomnia, crying, and begging God for help. And friends, it exists. There are so many people who walk through chronic pain and chronic illness every day. Like Rachel over on the Diamonds conference community, who is parenting four kids while navigating Dysautonomia. Or Esther, a young adult who found herself facing POTS as she finished college. Or Cassidy, whose dreams are in limbo as she handles EDS, POTS, MCAD, and Gastroparesis with her service dog Heidi.
In 2018, the CDC reported that 51.8% (129 million) of average adults had been diagnosed with at least 1 of 10 chronic conditions. That’s mind blowing. As I’ve recently joined a new community, I’ve found that statistic to be true in the friends I’m making. Sitting at a table of four friends from church recently, two of us were chronically ill. Of the eight people I see most often, none of whom are related to me, five have a chronic condition. And I didn’t even know that when I met them and began building a friendship!
Before I got sick, I had no idea what a chronic illness even is. There’s a reason we call them “invisible illnesses.” And yet, the longer I lived with a chronic illness, the more I realized just how common it is.
Let me say it again: you are not alone!
Someone Else Is With You Too . . .
For those of you who share my belief in God, there is another reason we are not alone.
Even if we were alone in our experiences, even if no one else in the world experienced the illness we have, even if no one has asked the same questions we have — we would still not be alone. It is my belief that there i