Coming Out of the Bathroom

I’ve decided it’s time to “come out of the bathroom.” To reveal a part of my life that previously has only been known to my family and close friends/associates.

Since the age of 12, I have suffered from severe Crohn’s disease. Crohn’s disease is a chronic disorder that causes inflammation of the digestive tract.* In severe cases such as mine, it can result in malnutrition and require numerous surgeries and hospitalizations.

Why is it such a big deal for me to admit this publicly?

An Invisible Illness
First, Crohn’s often is not a visible disease. Since Crohn’s occurs internally (in the digestive system), individuals suffering from Crohn’s frequently look no different from the healthy people around them. And since diarrhea and bloody bowel movements are not considered polite topics for conversation, Crohn’s sufferers rarely talk about their health with anyone but family and the closest of friends. The result is that no one suspects what those people with Crohn’s disease are going through, and they just blend into the crowd.

For me personally, this issue was all about image. During part of my career I consulted with individuals about how best to establish and manage their personal brand. When I thought about my own personal brand, I didn’t want that brand to include chronic illness or any mental images of toilets. What I failed to realize (whether out of fear or embarrassment) was that by editing the Crohn’s disease out of my personal story, I was leaving out some extremely positive traits I have developed due to the disease. For example, living with Crohn’s has driven me to become highly efficient at planning and project management (since Crohn’s teaches you to anticipate and prepare for all possible contingencies).

Risks Regarding Employment and Health Insurance
Second, in the U.S. today we live in what can be described as a health care dysfunctional society. If a potential employer learns that you suffer from a potentially costly illness, that can serve as an unspoken reason to not consider you for employment. Such action may not be legal, but employers often see it as a necessary evil to avoid increases to already expensive health insurance costs. Additionally, there often can be a (frequently incorrect) perception that the individual with Crohn’s will be a less productive employee, whether due to feeling sick while on the job or taking off sick time.

My first GI doctor used to say that only Type A personalities get Crohn’s disease. When I asked about this, he explained that many — if not most — of the Crohn’s patients he saw tended to be overachievers and workaholics. In those days stress was thought to play a role in the development and path of the disease, so the Type A observation fit well into that mind set. Based on my personal experience and the experiences of others I know with Crohn’s disease, I believe that observation reverses the cause and effect. It’s not that Type A personalities get Crohn’s disease, but rather people who develop Crohn’s disease are more likely to change into Type A personalities. I suspect it is an overcompensation effect. In my case, after developing Crohn’s I became a straight A student and later strove for success in almost everything I did in my personal and professional life. And there are numerous cases of people who, after being diagnosed with Crohn’s or ulcerative colitis (a similar disease that specifically attacks the colon), decide to climb the world’s seven highest mountains, run marathons and triathlons, and become rock stars.

The bottom line is that despite (or perhaps in part because of) my Crohn’s disease, I’ve built an extremely successful career, having climbed from entry-level to executive-level at the world’s largest management consultancy, started a small data processing business and then worked in a high-energy advertising agency environment. Any potential future employer than can’t see beyond my Crohn’s to appreciate what I have to offer probably won’t remain competitive in the long term. And I can live without working for a company like that.

Just the Tip of the Iceberg
There are numerous other issues associated with Crohn’s disease, and now that I’m “out of the bathroom” about this part of my life, I hope to be able to tell you more and answer questions you may have. I am not my disease, but Crohn’s is very much a part of who I am, hopefully more for better than for worse. Thank you for joining me as I begin my journey to put a public face on this disease.

*The best source for information about Crohn’s disease is the Crohn’s & Colitis Foundation of America, also known as CCFA. CCFA is a nonprofit, volunteer-driven organization dedicated to finding the cure for Crohn’s disease and ulcerative colitis. CCFA recently opened an Information Resource Center that provides accurate, current, disease-related information to the public, health care professionals, and patients and their families. The CCFA Information Resource Center can be reached at: 888.694.8872. The CCFA website is www.ccfa.org.

2 thoughts on “Coming Out of the Bathroom”

  1. Pingback: Running Napa to Sonoma in 2011 | Kevin A. Barnes

  2. Pingback: A Major Endeavour Begins | Kevin A. Barnes

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