Today is a big day for me. One I hadn't imagined even a year ago.
Today, The Mighty published my very first essay about living with chronic illness.
Why couldn't I imagine this a year ago? Because I was still convinced that the only way to succeed in a career and in life was to be quiet about the true toll of chronic illness. But over the last 12 months, I've begun to understand the cost of that silence. And I've begun to understand why it is so important to share honest experiences about life with chronic illness.
Here are five reasons I've discovered so far:
1. To Feel Less Alone
The first reason to talk about chronic illness is incredibly personal. Chronic illness is lonely. Living with chronic migraines involves hours, even days or weeks, stuck in a dark and quiet room—waiting and hoping the pain and neurological issues will pass soon. At its best it's isolating. At its worse, it's terrifying.
Even my family and friends, who are incredibly supportive, don't share this experience (thankfully). Until recently, I'd known people with episodic migraines, but never chronic migraines the way I experienced them. Years ago, I found a blog by a woman with severe chronic migraines. I read every post multiple times, yet I never thought to reach out to her. I can't explain why.
Then, in early 2020, I reunited with a high school friend in Washington State and discovered that she also lives with chronic migraines, among other conditions. All of a sudden, we were trading stories and tips. I wasn't alone. She clued me into Facebook groups of people with chronic migraines. I joined them and started devouring the posts.
2. To Help Others Feel Less Alone Too
The powerful sense of seeing my experiences in others' lives made me want to share my own. I posted in a couple Facebook groups and received so much support in return. I also started sharing with new writing friends and colleagues whom I trusted. That was when the magic happened.
Other people opened up in return. We shared our struggles with mental health and other chronic conditions. We talked about how these experiences had shaped our lives and how we were rethinking different aspects of our careers and personal passions. These weren't the casual conversations or small talk we so often fall back on. These were honest conversations about some of the hardest parts of life. Grief. Illness. Disability. And I never would've had them if I hadn't opened up, the way my high school friend had so generously opened up to me.
3. To Help Increase Awareness
I've always known that migraines have stigma. Some people say they're "just a headache," while others who don't actually have the condition use migraines as an excuse to get out of work. It's common to hear things like "this chart is so complicated it's giving me a migraine." Everyone also wants to give you advice: drink more water, take a Tylenol, try to relax more.
Like so many other chronic illnesses, only the people who live with the condition or live with someone who does, really understand what it is like. This is natural, but the challenge comes when those with chronic illness need accommodations.
Our cities and societies are not designed for people with disability and chronic illness. When I was recovering from hip surgery, using a brace and crutches, I couldn't get across the street before the walk-light changed. One time, someone in their car decided that was reason enough to shout a slur at me. That was awful, but the reality is that I never recognized the issue with the length of the walk-light until it affected me.
Sharing my own experiences is one way I can be part of increasing awareness and breaking down stigmas.
4. To Learn to Advocate for Myself
The more I live with this disease, the more I realize how it has affected every aspect of my life. When we went into lockdown at the start of the COVID-19 pandemic, the world became accessible to me in a way I had never imagined. I could attend conferences and literary events without trying to calculate how much the effort would cost me in sick-days. I could connect with other writers all over the world. With so much moving online, it was easy to make connections and build community.
Pre-pandemic, when I was trying to figure out what disability accommodations to ask for, I never imagined this level of accessibility. But now, even as much of this progress is rolled back, I'm still committed to thinking bigger. This means understanding what I truly need—and learning more about what others need to—and being brave enough to speak up.
5. To Join the Many Amazing Disability and Chronic Illness Advocates
I've worked with advocacy, organizing, and civic engagement nonprofits for 20 years, yet I'm only now beginning to discover the incredible advocacy work other disabled people and people with chronic illness are doing. As I began to learn more, I realized I wanted to be a part of it.
I don't yet know what my path will look like. But that's okay, because one of the things I'm finally acknowledging about living with chronic illness is that sometimes it's better to slow down and take my time. For now, it's enough to know that I have ideas and experiences worth sharing.