Illness Inequality

Life with Ulcerative Colitis

So why did you choose to read this article? Do you have Colitis? Crohn’s? Or maybe you just want to know the answer… To what? You know! The question in the back of your head: is there really a such thing as “Illness Inequality?” Short answer? In my mind, yes. I have been saying this for years.

My reasoning behind this theory is simple, more commonly heard illnesses or well known diseases tend to be respected more. It may not even be that more people have that illness, its just that people continuously hear about them. It’s easy to respect what you know (to be bad). BUT, other things can be bad too, and doing just a little research can show you just how bad it can be to live with an uncommon/ rare disease. I wanted to insert a quick story here. Something that’s always bothered me, maybe a little more than it should have. For personal reason I will NOT use real names or details too in-depth as I don’t want to offend anyone, but I would like to spread awareness to a very common issue.

Important background to know: I have been with my company for over 3 years now. My illness has caused me to have to leave work many times, sometimes for weeks and others for months at a time. Procedures, infusions, surgeries – you name it, I’ve done it.

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In the years I’ve been with my company I’ve attempted to raise money for the CCFA in support of finding cures for Crohn’s and Colitis, and while my coworkers have always been amazingly supportive and even my manager has put in decent size donations… There’s never been any major support from leadership. No blast emails encouraging people to donate or even acknowledgement of my illness or leaves. My longest leave from the company actually occurred close to this little “incident” we’ll be discussing today. My longest leave was April of 2015, a few days before my 23rd birthday. At the time I had an Ostomy and soon would have my J-Pouch created. (Definition of J-Pouch by RochesterColon.com: When the colon and rectum are removed (due to ulcerative colitis or familial adenomatous polyposis), another reservoir must be created for bowel contents (stool) to exit the body. Surgically creating a “J” shaped reservoir (called a J-pouch) is an option for selected patients to store and pass stool.) blog7The surgery was actually harder on me than I ever could have imagined. My body ached so bad, I bled out of places I still can’t locate in my body, my heart stopped in recovery which left me on oxygen for days so yeah… You can so Colitis is no “walk in the park.” Neither before I left work, nor when I came back was there ever any acknowledgement from leadership… Nothing mentioning my years of work, dealing with my illness, my long leave(s). No major welcome back (with the exception of my friends of course). Why does this bother me? A little before I left a newer person, maybe started working with us a year after I started, (well known illness that I shall not mention), was about to go out on leave… Leadership sends out this email blast to the entire floor about the person, to wish him well, we hope for the best outcome… Ect. The email was so detailed (compared to the nothing I got of course) that it left me wondering… How could I be with a company for SO long and work with people who really can undermine my journey? I’m sitting there… Anxiously awaiting YET ANOTHER surgery, Ostomy on my side, fat face because of the Prednisone and other medications I’d recently been on… yet and still… Because Colitis may not be as popular (I assume).. blog6

My journey was not acknowledged.. I guess that means my journey was less than his. My pain doesn’t matter because my illness is not something you usually hear about on tv… No really popular movies out there about the life of an IBD patient so you don’t really know WHAT we go through right? Whatever the reason I still overcame. I celebrate everyday what God has brought me through and just hope someday IBD and other illnesses can get as much recognition and respect as the more common/ well-knowns out there.

 

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1 thought on “Illness Inequality: My Colitis Doesn’t Matter

  • DIANE MEYER

    You have written so eloquently what my husband and I frequently discuss. It seems that some illnesses in our country are more worthy of sympathy and support than others. It is also acceptable to talk about those illnesses at the coffee machine, at lunch, or even before the start of a meeting. Yet, a lifelong inflammatory bowel disease (IBD, such as Crohn’s or Ulcerative Colitis, is taboo. Why? Could it be because it involves the digestive system? Maybe the commercials on TV lead people to think it is simply a case of “the runs”. They need to be told the truth about the unbearable pain, that infants can get IBD, that treatments are limited and have caused cancer and death, that it is expensive, that it can leave you totally disabled, and it cannot be cured.

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