As an Inflammatory Bowel Disease patient, one of the most common obstacles that I’ve faced is the stigma that goes along with living with the disease. Those who aren’t affected by IBD generally have very little knowledge about these diseases and what life is like for sufferers. When I was having surgeries to get my J-pouch and became an ostomate, I quickly discovered that the stigma and misinformation surrounding those in such circumstances was even worse. Not only are ostomates misunderstood, but they often poorly misrepresented in the media.
Personally, living with an ostomy was a life changing experience for me. I learned patience, humility and the fine art of laughing rather than crying. But before I needed an ostomy, I had little knowledge of them. In hindsight, I was just as uninformed as most people were because what little I knew came from the television or magazines.
The scary portrayal of ostomiesIn the past few years, however, ostomies have appeared or were mentioned in television shows or even in PR campaigns with greater frequency. Sounds like it would be a great win for awareness, right? Wrong. Rather than showing the way ostomies have saved lives,** the media, as well as government institutions, have chosen to use ostomies as a scare tactic**, which feeds into the negative and misinformed views people already have of ostomies.
In 2009, the popular TV show Grey’s Anatomy aired an episode in which a patient who was being counseled on various treatment options was told by a doctor that an ostomy would be the worst possible outcome. Ostomates and their allies across the globe were furious. Internet users sent a barrage of open letters to the show’s writers with examples of people sharing their stories of triumph and success to show that living with an ostomy is not a last resort and definitely not a worst possible outcome.
But the buck didn’t stop there. In 2013, as part of a new campaign to keep juveniles away from guns, the Cincinnati Police Department started promoting a statement about how these kids wouldn’t want to walk around with a colostomy bag and that a colostomy bag was no way to attract girls. In response, the ostomy community lit up media outlets to explain that ostomies should never be used as a scare tactic. While the police department later apologized for their massive misrepresentation of ostomates, the damage had already been done. People who’ve come across the campaign’s message were now under the impression that if they ever needed an ostomy, their lives would be horrible and it would render them unattractive.
The most notably egregious portrayal of ostomies probably took place in last year when the Centers For Disease Control is 2015 included them as part of a major anti-smoking campaign. To get their point across about the consequences of smoking, the agency released a series of public service announcements showing various examples of people who had been negatively impacted by cigarette use. One of the stories involved a woman named Julia, who said that she developed colon cancer because of smoking and now required a temporary ostomy. Once again, the mention of ostomies serves as a scare tactic.
Besides being downright offensive to past and current ostomates, the original video posted online was also used to spread inaccurate information. While the CDC would eventually change that version of the ad after IBD and ostomy-related organizations spoke up and demanded the removal of the ad, there were still commercials that ran the original ad. And it wasn’t until numerous petitions, tons of emails and various pro-ostomy internet campaigns that the CDC finally obliged and took down the ad from their YouTube channel.
The toll on lives and what can be done about it
While the three examples may not seem that problematic, collectively they’ve only served to further the stigma and negative perception surrounding ostomies. Instead of allowing ostomates to be seen as people who are living happy, healthy lives, they end up being perceived as different, as lacking, and even sometimes pitied by those they know. And without the ad dollars to combat all these negative media portrayals, the vast majority of their success stories will go unheard by the general public.
So what’s the solution? IBD and ostomy organizations should keep pressing forward to create positive places where ostomates can share their stories and encourage others to continue living happy, healthy lives. While we may never have the influence of a large ad campaign, we do have something very powerful: word of mouth and the big wide internet.
At any time, a potential or new ostomate can go online and find countless stories of empowerment and triumph from those living with ostomies. Through mentorship programs with various organizations, they can meet other people living with ostomies and learn first hand what it’s really like. As a former ostomate, I can say that I learned so much when I had mine, an experience that has led me to dedicate myself to raising awareness and to helping to create a positive perception of ostomies. Every positive story that patients are able to share can change someone’s opinion or educate them. Together, I think that we will slowly erase the stigma.
Jackie is an ulcerative colitis patient and the founder and Executive Director of Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community, and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page.