Why It’s Important To Write About Your Invisible Illness
Writing about your invisible illness can be daunting at first.
Where do I even begin?
Do I reallllllly want to put this in writing?
Who’s going to want to read this?
In the process of writing my own stories, I’ve asked myself all these questions.
But time and again, I’m reminded how powerful a story can be.
A few years ago, my friend was experiencing really odd symptoms and didn’t know what could have caused them. She Googled her symptoms and landed on a personal essay about rhabdomyolysis. She took herself to the emergency room with the essay printed out and hinted to the doctor that she thought she knew what was wrong. The symptoms chronicled in the essay were strikingly similar to hers. It turned out she was right. She had rhabdomyolysis, a serious condition that can lead to kidney failure.
While we all know that Googling symptoms can sometimes be unhelpful (or even dangerous—Google doesn’t have a medical degree), in this case, finding a personal account allowed my friend to piece together her own symptoms and get a quick diagnosis.
It’s not just about diagnoses, either. After I published an essay about my health on HuffPost back in 2015, I remember scrolling through my Facebook feed and seeing a childhood friend share her friend's essay on HuffPost. When it said something about “burnout” in the title, I clicked and read. I felt like I was reading my own piece.
It was so validating to see my own story reflected back to me. Though the words weren’t the same, what we had been going through was incredibly similar. I immediately reached out to the writer acknowledging that I’d recently left my job, just as she had, because my health needed to be the priority. We became fast friends. I introduced her to a friend of mine who she ended up working with, and she introduced me to someone who became a friend and colleague in the coaching space.
You never know who you can reach by sharing your invisible illness story. It might be the person who needs to hear it most. And writing can also be powerful for you, the writer. Putting your story into words on paper is different than talking about it. Writing about your invisible illness allows you to reflect on your experience in ways you might not otherwise. That can be rewarding for you and your readers.
Five reasons why it’s worth writing and sharing your invisible illness story:
It’s therapeutic. No matter how much your invisible illness impacts your daily life, it’s something that you have to navigate constantly. You may lean on a therapist or supportive family and friends, or look to activities like working out, meditating or napping for self care. Writing is one more avenue open to you--it can provide you with a safe space to put your thoughts, feelings and sensations on paper. It can help you process what you’ve been through and what you’re currently experiencing. Oftentimes, writing can help you realize common threads about yourself and your story. It’s valuable to get these thoughts and feelings on paper to see them in new ways and ultimately release them!
You can help the people who love you understand you better. One of the challenges with navigating an invisible illness is that you often feel responsible for keeping people in the loop. This often looks like constantly explaining your health to people or even comforting people if they’re anxious or fearful about your diagnosis. It can get really exhausting. Writing and sharing your story can help those who care about you better grasp what you’re going through. They can educate themselves so it’s not always on you to explain.
You may feel less alone. If someone reads your writing and can relate, they’ll potentially reach out and acknowledge how they felt similarly to you and how much they appreciated you sharing. Managing an invisible illness can be extremely isolating, but sharing your story can help you and others realize that you’re not the only one going through it.
You can share your inner, invisible world. It’s difficult for anyone who doesn’t live with an invisible illness to grasp what invisible illness feels like in your body, what’s going on in your heart and mind, and what it’s like to navigate your condition on a daily basis. Whether you speak eloquently or not (or whether you choose to discuss your health), writing allows you to craft a story on your terms and gives a glimpse into your life.
Your work raises awareness. There are many very rare invisible illnesses that people have never heard of. Writing your story about living with a rare condition and/or rare symptoms, side effects, and situations, can help people discover your story and help inform other people. For those who are misdiagnosed or haven’t yet been diagnosed, finding your writing could help them get closer to answers.
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