Breast Cancer & Crohn’s Disease

For those of you with Cancer, PLEASE read this article in the spirit in which it was written.  That is, to highlight the extraordinary “Breast Cancer Awareness” movement built by the various Breast Cancer organizations as a “model” for similar Charitable/Awareness “Crohn’s Disease” programs.  Admittedly, I have a “horse in that race,” because I have been battling Crohn’s Disease for almost thirty (30) years, but what good is having a public platform if you can’t use it to bring attention to a chronic, autoimmune, incurable illness which has landed you in the hospital OVER two hundred (200) times and caused at least twenty (20) major surgeries? [rhetorical]

I am particularly impressed with the Breast Cancer organizations and their October-long highly visible affiliation with the National Football League (“NFL”).  I am not in any way comparing the suffering of a Breast Cancer patient to that of a Crohn’s Disease patient.  I’m just getting tired of suffering terribly as a Crohn’s Disease patient only to see late-night cable television commercials cast a “Crohn’s Disease embarrassment” stigma to the illness. Yes, the National Crohn’s & Colitis Foundation (“CCFA”) organization and the State and International CCFA Chapters do a great job via various “grass roots” fund-raising and support Initiatives.  But educating the mainstream about Crohn’s Disease has not been successful as evidenced by so many intelligent people still not having a clue about its possible physical, mental, financial, professional, social, emotional and familial effects.  These same mainstream people also have no understanding of the possible pervasive nature of Crohn’s Disease. [To all the Crohn’s Disease volunteer folks out there, THANK YOU for your efforts.  Please don’t interpret this Blog Entry as any sort of indictment of your selfless dedication and tireless efforts.  I’m merely bringing attention to an additional global corporate approach which would supplement your fine and MOST APPRECIATED work. ]

Current Ineffective Crohn’s Disease TV Commercial

It has been my experience that the CCFA Chapters around the world offer fantastic fund-raising and support assistance.  My criticism is limited to the more-corporate-minded folks who are trying to expand the world’s understanding of Crohn’s Disease so they can attract additional funding for research, education, support, etc.  I know it is expensive and difficult to create effective mainstream television commercials to raise awareness about such a quirky autoimmune disease.  In that regard, I believe money is presently being wasted on the current cable television commercials because their focus is on the wrong aspect of Crohn’s Disease as they depict afflicted patients as helpless victims of some mysterious illness which can initially strike at any time and then unpredictably recur to make life unmanageable.  Given the extraordinary people who battle Crohn’s Disease every day and still manage to accomplish their goals despite the added unpredictable adversity, and in doing so utilize their senses of humor and true grit to cope with Crohn’s, I therefore resent this “pity approach” being taken by these advertising campaigns.  Instead, let’s educate the public by celebrating these people and the way they live their lives as I’m afraid the current “promotional” strategy runs the risk of scaring away the general public from a dark, painful, unpredictable, bathroom-messy stigmatized disease.

The Focus of an Effective Crohn’s Disease Promotional Campaign

I wish these commercials would focus more on WHAT Crohn’s Disease IS and how different people SUCCESSFULLY MANAGE IT rather than on almost unthinkable doomsday scenario images which understandably elicit life-interrupting or life-changing thoughts like:

Should I try and go to law school or is it a waste of my time because my Crohn’s Disease will unpredictably hospitalize me so many times during the three (3) years of law school that I’d never even graduate?

Should I turn down those tickets to the Yankees-Red Sox Playoff Game because Yankee Stadium bathrooms are disgusting?

After being diagnosed with Crohn’s Disease, how do I re-write my ‘Life Plan’ in terms of which career to pursue?

When should I tell my new girlfriend that my excuses for LONG bathroom trips are not because I ran into an old college fraternity buddy along the way?” 

“When do I tell my new employer?”  “Do I even tell my new employer?”

“What if I have an emergency while traveling or sight-seeing, where’s the nearest public toilet?”   “What if it’s unsanitary and disgusting?”

“Might I have to suddenly ‘use the facilities’ in the middle of a meeting at my corporate job?

“What if, at that corporate job, I have ‘accidents’ in the middle of meetings with my colleagues?”

Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) patients usually find ways around these “challenging” situations and the result is some VERY special and mentally tough children and adults. (Note: The acronym “IBD” is often used as a catch-all term for all “inflammatory” bowel diseases such as Crohn’s Disease and Ulcerative Colitis). These children and adult patients also develop sharp senses of perspective and humor simply because they must in order to cope with the nuances of their quirky disease. Therefore, mainstream television commercials about Crohn’s Disease/IBD should focus more on these brave patients/people and how they overcome the daily adversity they must face in order to live a relatively normal life.

Talking ’bout Crohn’s Disease – the “Bathroom Stigma”

Nobody likes talking about “going to the bathroom” but that, unfortunately, is often a major part of having Crohn’s Disease.  Losing a Breast, is, unfortunately, often a major part of having Breast Cancer and that is also an uncomfortable topic to discuss.  Yet, openly discussing the ravages of Breast Cancer has somehow been more readily accepted by the mainstream than conversing in anything regarding Crohn’s Disease.  I think that is because of the wonderful educational and awareness work being conducted by the well-organized different Breast Cancer charitable organizations.  To that end, I am only pointing out that analogous Crohn’s Disease charitable organizations could learn a lot from them.

The Power of Pink in the NFL

In terms of Breast Cancer and the NFL, October is “National Breast Cancer Awareness Month.”  The NFL is only one (1) of MANY mainstream corporate sponsors who participate in this extremely well-run and effective charitable endeavor by these Breast Cancer organizations.  Watching NFL Football Games and seeing the players all wearing some PINK-colored uniform apparel parts demonstrates the influence and creativeness of these Breast Cancer charities as the style-minded, machismo NFL players would never be caught donning pink clothes unless they were ready to be ridiculed by their fellow NFL players for “coming out of the closet.”

Perhaps this is not politically correct to say, as there is nothing wrong with men wearing pink, homosexuality, or the inference of the connection between the color pink and homosexuality, but the NFL is a collection of the most “manly” men in the world, so that “pink” perception could be problematic.  However, the NFL Pink Campaign is extremely successful and these NFL Macho Men are doing this to HELP A CAUSE that affects SO MANY WOMEN.  I guess the lesson to be learned is to never underestimate people when it comes to their charitable and empathetic endeavors.  Are the Crohn’s Disease organizations paying attention to this? [again, rhetorical]

The Power of Humor & Creativity in Raising Awareness

Kudos to the Breast Cancer charity corporate folks for sticking with their pink logo colors even within the NFL’s macho culture.  Whether it is a sense of humor or pure formidable sales ability, these Breast Cancer organizations are very clever.  Perhaps the Crohn’s Disease folks could follow that lead and have a little fun at their own expense, and in doing so, dispel the “bathroom disease” stigma  for “entertainment” and then for educational purposes.  A little creativity and humor would go a long way toward attracting people to wanting to LEARN ABOUT CROHN’S DISEASE.

Besides savvy corporate partnerships like that with the NFL, the public’s awareness that every October is National Breast Cancer Awareness Month attracts a wide, and thus diversified, array of potential charitable Breast Cancer partners and programs.  By way of example, I recently read the following on the Web regarding a “New Media” Breast Cancer charitable program between Susan G. Komen for the Cure® (i.e., one of the most widely known, largest and best-funded Breast Cancer organization in the United States) and Playboy which makes so much sense I am surprised other charities have not done this before given the consistent and worldwide allure of beautiful women and Playboy’s need to always further “corporatize” and maintain their mainstream reputation:

Playboy Enterprises, Inc. is pledging to donate 10 cents to Susan G. Komen for the Cure® for every new Twitter follower it receives during the month of October.  Each time a Twitter user follows Playboy @Playboy, the company will make a 10 cents donation to the ‘Bunnies for the Cure Team’ – a group of more than 15 Playmates that will participate in the ‘Race for the Cure’ in Los Angeles on March 24, 2012.  

The “Awareness Hurdle” for Crohn’s Disease

I could go on and on about the innovative, efficient and effective ways in which money and awareness are raised by Breast Cancer organizations, but I’m more interested in learning what can be done for Crohn’s Disease to accomplish these same goals.  In that regard, let me briefly convey the typical “Awareness Hurdle” Crohn’s Disease faces by comparing the following two (2) mock conversations between two (2) friends at lunch.  Scenario One (1) is a lunch restaurant setting between best friends Francine and Lisa, after Lisa comes from a doctor’s appointment in which she is diagnosed with Breast Cancer. Lisa’s husband is Andrew.  Scenario Two (2) is the same lunch restaurant setting between best friends Richard and Michael after Michael comes from a doctor’s appointment in which he is diagnosed with Crohn’s Disease:

Scenario 1

“Francine, I don’t know how to even share this news with you but I have just been diagnosed with Breast Cancer by Doctor Shapiro.  That’s why I was late getting here as I had to be consoled by Andrew who was cool enough to come with me, to what I thought was going to be a routine appointment.  In fact, it was Andrew who stopped me from cancelling our lunch, when he pointed out that you might be the best person for me to spend time with after such a life-changing event. I am lucky to have such a cool and supportive husband.”

Oh my God,” Francine replies, “How far along is it, will you need surgery, chemo and radiation?   Before you answer, I just want you to know that I will be there for you at every step along the way, whenever you want.  With the support of Andrew and all of your friends rallying around you, YOU WILL get through this.”

“That’s wonderful to hear, Francine, but I gotta tell you that I’m scared.  I asked all those questions you asked me and the doctors don’t know yet as I must go for more tests the day after tomorrow.  I’m also going for the obligatory Second Opinion”

Francine puts her arms across the table reaching out for Lisa’s and she holds them tenderly as a sign of support and acknowledgement.  This embrace of sorts goes on just a little too long as people in the restaurant are starting to stare so Lisa gives Francine a look of emotional appreciation and the two women resume their lunches never forgetting about the “elephant in the room” called Breast Cancer.

Scenario 2

“Rich, how’s the wife and kids?  I’ll bet your son can already beat me in basketball?”

“Michael, my Daughter can beat you in basketball.  Thanks for asking, though, everyone is fine.”

The waiter comes over to take their orders for lunch but Michael waives him off as if he is not done talking to Rich yet.  Rich’s attention hasn’t left the over-sized menu when Michael says, “Rich, I gotta tell ya’ somethin’ that happened to me this morning.”  Michael takes a long pause which gets Rich’s attention.  “You know those intense stomach pains I always complain about and how sometimes exhaustion overtakes me out of nowhere?”

Rich, sensing Michael’s seriousness tries to lighten the mood a bit.  “Mike, anyone who is friends with you knows about your stomach ‘issues’ as we’ve all had our Plumbers on speed dial ever since you moved back from California.”

“Very funny Rich.  But this is serious.  After undergoing several tests and something this morning called a ‘Small Bowel GI Series,’ my Doctor told me that I have ‘Crohn’s Disease.’  I’d never heard of it before but he said it is an ‘auto-immune illness’ which can exacerbate and become very serious. However, it also is a disease with a ‘broad spectrum’ so I may never get sicker than I am – but I’m worried.  The pain is getting more intense and every once in a while the cramps are so bad that it feels like I am going through, what I can only explain as Child Birth Labor, as the Cramps can last for HOURS until I have a bowel movement.  And ‘auto-immune,’ I have no idea what that means in everyday life.”

Rich, not exactly “Mr. Sensitive,” listens intently to every word  but then, as is his nature, uses humor to cope with the seriousness of the moment. “I’m goin’ with the Bacon Burger. You’ve eaten here before, what are you ordering?”

“Rich, I’m serious, I am very worried about this diagnosis of ‘Crohn’s Disease,’ what should I do?”

“Michael, I wasn’t tuning you out. I heard everything you said. It sounds like  you now have the perfect excuse to tell women when the smell of your Farts makes them WILT!  Seriously, ‘Croowns Disease,’ or whatever it’s called, is something I never heard of either – so I’m sure it can’t be too bad.  You will be fine.” (Underline is for effect)

The guys drop the medical conversation and continue to a lunch of laughs.  There is no “elephant in the room.”

This “Awareness Hurdle” is something I come across almost every time I am asked about my Disability of Crohn’s Disease.  People whom I have met either socially, professionally or personally, simply don’t “get” how a 49-year old athletic looking man can get so sick and be so disabled from some “disease” they have never heard of and probably cannot spell correctly.   Life is too short so I no longer even try to explain my Crohn’s Disease but recent medical problems were so serious that they finally helped me overcome this Awareness Hurdle as the word “Chemotherapy” conjured up a certain image that is as serious as Life gets.  The phrase “Breast Cancer” also conjures up a specific serious image which people all around the world respect.

What image does “Crohn’s Disease” conjure up?  Therein lies the rub.