You’re Not The Only Chronic Illness Warrior

“I can’t, but thanks for the invite.” The sentence echoes 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 TheReb. 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 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  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 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 was. There’s a reason we call them “invisible illnesses.” And yet, the longer I’ve lived with a chronic illness, the more I’ve 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. We follow a God who sees. Not only does He see, but He understands in a way that no one else can. He Himself has experienced pain. But it doesn’t even stop there! God not only sees and understands, He enters in and sits in the pain with us. He is with us when the sound of our family’s footsteps fade and the world is too quiet.

Other people have their own experiences to focus on. Other people have their limits. But He does not. He grieves with us over our pain. He grieves the loss of things that are good. Psalm 34:18 describes Him as “near to the brokenhearted”. And often, He cares for us through people, both those who understand and those who do not.

How Do We Find People In The Same Boat?

So how do we find those people that do understand? If it is truly over 50% that experience this, then where are they and how do we connect with them?

It takes a shift in thinking. It takes creativity and intentionality. But they’re probably closer than you think. When we try to get to know people the way we did before we got sick, we get stuck. Often, chronic illness can prevent us—and those with similar experiences—from participating in the usual social activities. Which means we need to look for kindred spirits in unusual places.

Like an online forum (ever heard of this awesome place called TheReb?).

I would also encourage my fellow chronic illness warriors not to disregard those who have not experienced chronic illness or pain. As author Holley Gerth wrote in her book Fiercehearted, “We are all more alike than different. We are all broken. We are all beautiful. We are all in need of grace.”

My friend who experienced the loss of her son may not have any experience with chronic illness, but she totally gets grief. She understands the confusing waves of emotion. My expat friend may not have experience with chronic illness, but she understands what it is like to struggle to combine two cultures in the way I struggle to combine medical culture with other cultures outside of the medical world.

Empathy bridges many gaps, and God equips us with compassion and understanding for each other.

If We’re Not Alone—What Now?

So, friend, let me say it a third time: you are not alone! You are not the only one going through long-term health challenges. You are not the only one wrestling with big life questions. You are not unseen.

As you soak that in, I have a challenge for you. Speak this truth to someone else who needs to hear it.

Jess and I met in a small group by sheer chance. I asked what she did for a living and her husband spoke up, “She takes care of herself.” His support for her was obvious. And as unusual as it sounds, I immediately understood. She, like me, was chronically ill.

“It’s . . . just so nice to meet someone who understands.” Her passionate words echoed in my heart. The knowledge that someone understands is life changing.

Today, who can you look in the eyes and tell that they are not alone?

Let’s help others live not alone too.

Editor’s Note: If you or someone you know is feeling alone in your journey with chronic illness, please click the link to learn all about Sara Willoughby’s Diamonds Spring 2024 Event: Journeying happening March 15th-17th. Diamonds 2024 is an online conference for chronically ill Christians and Christians with health challenges and is completely FREE while it’s live. Diamonds 2024: Journeying Tickets, Fri, Mar 15, 2024 at 12:00 PM | Eventbrite