Two years ago I created a site designed to host anonymous secrets from the diabetes community. The goal was to provide a safe place for people to share what they were feeling and experiencing without fear of stigma, shame, or judgement. But battling stigma and judgement is not unique to the diabetes experience, and that is why my expansion of the My Disease Secret platform brings us here, to the launch of My IBD Secret.
In my conversations with IBD advocates, I’ve learned a lot about the struggles for acceptance and validity not only within the broader patient community, but with society at large. The common “you don’t look sick” trope often comes into play as I read the horror stories of people being accosted for using disabled parking spaces despite being legally afforded the right to use them, or the dirty looks received when preboarding a flight because you need extra time to make sure everything is in order. Your struggles are real. And while I may not have the same experiences as you, I certainly understand what it’s like to live with a disease that people generally don’t understand or have a wildly off-base perception of the realities of what it takes to live a “normal” life.
My hope is that My IBD Secret can shed some light on what it’s really like while also offering the IBD community a safe space to share their experiences and emotions – a safe place to share your IBD secrets. No judgement. No shame. No stigma. Merely catharsis through honesty.
To help make sure I get this right, I’ve partnered with some of the smartest and most passionate advocates I know, Carly Medosch (diagnosed with Crohn’s at 13), Duncan Cross (diagnosed with Crohn’s at age 17), and Kelly Crabb (diagnosed with Crohn’s at 16). With their knowledge and experiences, together we will do our best to make sure this site treats the IBD community with the respect it deserves.
If you would like to share a secret of your own, you can use this submission form.
If sharing and reading these secrets is not enough, this resources page includes links to other community and non-profit sites within the IBD ecosystem. I will continue to add new links to this page as necessary. If you have any suggestions to make, please send them to myibdsecret at gmail dot com.
Having launched sites like this for the diabetes, chronic pain, arthritis, lupus, cystic fibrosis, and mental health communities so far, I know there’s something to this “me too” philosophy that powers the sharing and connecting behind each of these sites.
I hope this works.