Last year on Mother’s Day I committed to participating in a walk, not a fundraiser or charity walk but a leisurely 8 mile walk with a hiking group exploring nature and the New York City scenery.
After 18 years of living with Crohn’s disease and undergoing 5 surgeries, countless needles, procedures, x-rays, MRI’s and medications I’ve learned to deeply appreciate the days I’m virtually pain-free with a bit of energy. I try to take full advantage of good days, and to me that means being active in some way.
That day I woke up determined to join the walk I signed up for a few days prior and was so glad that I did. We walked through parks and stopped at landmarks along the Hudson River, taking pictures and getting to know each other. Some hikers were history enthusiasts or architecture enthusiasts or just love New York like myself. Towards the end of the walk we took one of our last mini breaks in a beautiful blooming garden behind a church.
I sat down on a bench next to one of my group members and hearing her long weary sigh made me ask if she was ok. We were all getting tired, but free to drop out at any time so I figured she was about to tell me she was going to call it a day and go home. She told me she was fighting fatigue, and that four months prior she had surgery due to rectal cancer. In that moment I felt comfortable enough to confide in her that I actually had ileostomy surgery five months ago due to Crohn’s. She took her hand and slowly covered her mouth that had just dropped wide open as her eyes filled up with tears.
She said she had a colostomy and was having a really difficult time adjusting to her new life.
She was in disbelief that I could identify with what she was going through and would’ve never guessed that I had an ostomy too. Her name was Wendy and she told me that she attended support groups for cancer survivors and support groups for ostomy patients, but never met another African American woman with an ostomy. I was surprised she had such a strong reaction to my reveal but I completely understood. Both of our spirits were reenergized as we stuck close for the rest of the hike, talked and got to know each other. We exchanged contact information and attended an ostomy support group together not too long after.
Before I met Wendy I also struggled to identify with other patients and ostomates. With my initial Crohn’s diagnosis over 15 years ago I searched information online, read through medical pamphlets, saw commercials for treatments but rarely saw patients of color representing the community. Unfortunately, not too much has changed. Within the last two years of living with an ostomy I’ve seen several advertisements for supplies, products and accessories, but not much diversity in race.
Currently I’m a member of a fashion Facebook group created for female ostomates to connect with fashion tips, experiences and general advice. Seeing posts from one particular member always make me smile inside. She posts pics with her husband or solo rocking jeans, dresses or her traditional Indian saris.
To feature different looks, races, ethnicities, and perspectives establishes that there's a place for everyone in the collective healing.
It also highlights our similarities as patients and lends opportunity for everyone to make a difference in treatment and care. Under-representation could be due the number of people of color living with ostomies being proportionately less than other demographics, compounded with the fact there’s a still a stigma that continues to surround ostomies which causes patients to refrain from disclosing their condition.
I also do need to mention two advocates I’ve seen raising awareness. Gaylyn Henderson of Gutless and Glamorous and model Jearlean Taylor of Osto Beauties are both laying the groundwork as women of color fearlessly sharing their inspiring journeys as ostomates.
As humans we instinctively and continuously seek connections through familiarity and too often a chronic and/or invisible illness means suffering in isolation with limited or delayed options on where to go and who to turn to, so when patients seek resources and understanding a lack of representation will only tell a part of the story.