No-one wants to hear you talk about your chronic illness

No-one wants to hear you talk about your chronic illness. 

This is what I learned while attending HealthEvoices17, a gathering of patient advocates from all over America, in Chicago last weekend. 

No-one wants to hear you talk about your IBD. IBD is a gross and shameful and depressing thing to hear about. It involves poo and bowels and things going up your asshole with cameras on the end of them. No-one wants to hear that shit. 

No-one wants to hear you talk about your diabetes, Type 1 or Type 2. No-one wants to hear about your levels and your finger pricks and your insulin injections. No-one wants to hear about your diabetic comas and your amputations. Diabetes is probably your fault right? You did something to bring it on. Whether it was eating too many cupcakes or being born African-American. Chew some lettuce and keep it to yourself. 

No-one wants to hear about your mental illness. No-one wants to hear about the drugs you take to stop the voices in your head. Schizophrenia and Bipolar are just fancy words for crazy right? No-one cares if you’re depressed. Cheer up already. We all have bad days don’t we? 

No-one cares about your MS. What even is that, is it actually a thing? No-one can be bothered to figure out what it is and how it affects you. Take a Berocca or something. Go to the gym. You’re probably just lazy or weird, I don’t know. Get your MS out of my face. 

No-one wants to hear about your cancer. Seriously, enough with the cancer already. No-one wants to hear about the breast or the ball you had lopped off. No-one wants to hear about your hair falling out or how many years or months or weeks some doctor gave you to live. No-one wants to hear about chemo or radiation. No-one cares how that stuff affects your love life. What, you have cancer AND you want to have sex with people? Get a grip on reality. 

No-one wants to hear about your psoriasis. Yeah, we all had zits as a teenager but most of us got over that shit. Put some cream on and wear long sleeves. Your psoriasis is gross, seriously. 

No-one, and I mean no-one in the world, anywhere, wants to hear about your HIV. No-one cares how you got it or what it meant to the people around you. No-one cares about the stigma you face every day. HIV is a choice right? No-one wants to think about something like that. No-one. Please, don’t even say the letters, it’s ruining our vibe. Go out in the woods and die already. 

No-one wants to hear you talk about your chronic illness. 

That's what I learned at HealthEvoices17. 

I learned that that statement is the biggest and most dangerous lie you can ever tell yourself. 

I learned that courage is found by challenging it. 

I learned that people who are willing to talk honestly about their illness inspire others. 

I learned that the fear and loneliness of a life-shattering diagnosis can have an upside. 

I learned that I was part of a community of voices. 

I learned that the people in the room were my friends and family. 

I learned that our identities were much greater than our illnesses. 

I learned that we weren’t there because we were sick, but because we were alive, and strong, and brilliant. 

I learned what it actually means to "speak from your heart". 

I learned that together we lift up our voices each day and help millions of people feel less afraid and alone. 

Together we fill each day with purpose and meaning. 

Together we shape the course of the now and guide it to a better tomorrow. 

Together we suffer, and struggle, and live, and find love, and forge better selves, and break down barriers, and educate, and advocate. 

Together we challenge misinformation and overcome stigmas. 

Together we laugh and cry and learn and keep living. 

Together we thrive. 

Thank you to Janssen for bringing us together, and thank you to everyone I met, and listened to, and spoke to and fell in love with at HealthEvoices17 for teaching me so much. 

Let’s keep learning from one another. Let's keep teaching others. 

Let's keep talking.

 

Disclaimer: Janssen paid for my travel expenses to attend this event. All thoughts and opinions expressed are my own.

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