What Do You Want Other People To Know About Finding a UC Community?

As a Black woman with ulcerative colitis, Kimberly Hooks of Powder Springs, GA, felt completely alone. “No one in my family had this disease,” she says. In hopes of finding a community and helping others with UC, Hooks began sharing her story on social media. She was amazed by the number of people who responded with stories of their own. Eventually, Hooks discovered the Color of Crohn’s and Chronic Illness organization, where today she is an ambassador. “IBD does not see one particular color or one particular race,” says Hooks. “It affects everyone.”

For years, I never really knew anyone that was diagnosed with ulcerative colitis. That was a time where I really just felt alone. Finding a community is amazing. I started sharing my journey on social media around the time of my first ostomy surgery because that was a time where I really just felt alone. For years, I never really knew anyone that was diagnosed with ulcerative colitis. And on top of that, to be a black woman with ulcerative colitis, no one in my family, no friends, no one that I could particularly relate to. So, something told me to just kind of share my journey. I found some new faces, black and brown individuals with this disease. And then when I start sharing my journey there’s so many people out there with ulcerative colitis. I felt a sense of I don’t have to be ashamed anymore. I don’t have to be embarrassed anymore because I’m not the only one with this. Living with IBD, I notice, and we notice, that there are some inequities when it comes to IBD. When I had my ostomy surgery, I would receive pamphlets in the mail and the pamphlets where I had to order my supplies the only pictures that I would see was of Caucasian men or women, and everyone was over the age of 60. There’s IBD commercials out there, but you really never really see people of color. It brings us back to the fact that, you know, representation does matter and that, you know, IBD - Crohn’s - colitis, it does not see one particular color, one particular race, like, it affects everyone. It’s been a true blessing to be able to share my journey along with helping others because I truly feel like this is my purpose. For years I struggled, but all of that wasn’t in vain because I now know that it has never really been about me. My purpose now is just to share, help others that are going through this and share my experiences.