To the People Who Say I Talk About My Illnesses Too Much
On a couple different occasions, people have told me I talk about my illnesses too much. But let’s step back for a moment.
When was the first time you heard about autism? How did you learn about peanut allergies? What about Crohn’s disease? Or cancer? Who told you about these things? If you say you read it on the Internet, someone had to talk about what was going on inside their body with a writer before you read about it.
These things need to be talked about. How many lives have been saved since people started talking about breast cancer? How many lives have been saved with earlier screenings? How many people are aware of meningitis symptoms and know when to get help? How do you know to go to the doctor when you have the flu? It’s because you knew what to watch for. Someone has to talk about these things for you to be aware of them.
Most people don’t normally know what gastroparesis is or know what it’s like having nine food allergies, let alone 40 food allergies. And the only way we can find a cure and get better is to talk about it.
I don’t talk about my illnesses because I’m bored and have nothing else going on. It’s because no matter what I do and no matter how I handle my life, my illnesses control parts of it. If I touched a walnut or wasn’t paying attention to what I was eating, I could hurt myself.
My illnesses don’t take breaks, my illnesses don’t take days off, my illnesses don’t get magically better with medicine.
Yes, I talk about my illnesses a lot. If I didn’t talk about it, you wouldn’t understand what I was going through. You wouldn’t know how easily a peanut, tree nuts or corn could hurt me. Talking about it could save me if I were ever in trouble.
If we don’t talk about it, nothing will change. We won’t get treatment. We won’t get a cure. We won’t get a better life because no one will do research about what’s going on inside our bodies.
We need people to help us create as much awareness as possible because we could save someone else from not knowing what is happening to them. People with chronic illnesses and rare diseases can go years in horrid pain without a diagnosis and without any help.
So thankfully, we have people who talk about rare diseases and chronic illnesses. Maybe one day when I tell people I have eosinophilic esophagitis (EoE), people will know what I’m talking about just like other well-known diseases.
A version of this post originally appeared on ShayWeasel.
The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.