While the majority of friends and family are amazing cheerleaders, supporters and compassionate caretakers…there are always a few who manage to make an insensitive comment or question the severity of your disease along the way. Most of the time it’s not malicious, but more innocent ignorance…at least I like to tell myself that.
Over the last 11 years I’ve heard it all “You don’t look sick?!” “You’re sick, again?” “Don’t worry about the effects of the steroids, you have puffy checks anyways!”, “You’re a sickly, frail girl”…but following my surgery there were a few comments and conversations that made it back to me that left me incredibly disheartened. Comments that I may be able to forgive, but will never forget. One of them questioning “Why is she getting so much attention? I had a C-section. There wasn’t all this talk when I was sick.”
Ok. Let’s get one thing straight. A C-section may have a similar scar, but there is absolutely NO COMPARISON to the procedure. With a C-Section part of your body is not cut out of you. You come out of the procedure receiving a baby, most likely one of the happiest moments of your lifetime. Sure you need time to recuperate from being cut into, but you have the joy of staring at your bundle of joy and knowing your pain was so that little life could enter this world.
With the surgery I underwent, 18 inches of intestine were removed. My ileocecal valve as taken. What’s that valve do? It helps you “hold it” whenever you have to go to the bathroom. My appendix was removed (who would have thought?!) and the surgeon explained that all of my intestines had been pushed down into my hip area and had to be “put back into place.” It’s not as simple as cutting out the intestine and connecting it to the colon and being good as new or cured. For the next year…and truly for the rest of your life, your digestion is different. Your internal organs are forever changed and that carries over into how you feel on a daily basis. According to the Crohn’s and Colitis Foundation of America (CCFA), an estimated two-thirds to three quarters of people with Crohn’s will have one or more operations in their lifetime. About 20 percent of patients show a recurrence after two years, 30 percent after three years, and up to 80 percent by 20 years.
I’m going to get real graphic and personal here because it needs to be said in order to make my point clear. I’m sure fellow Crohnie’s have experienced much of the same. While I was recuperating and working from home half days before I went back to work last summer, I had an accident. No, I did not fall. As a 32 year old woman, home alone, all by myself, I wasn’t able to cross the tiny hallway to the bathroom to “make it” on time. Imagine that. How would you feel if you knew your body wasn’t functioning correctly? Completely dealing with unchartered territory, not knowing what is going to be thrown your way? Never knowing when the next time THAT could happen again is. What if it’s in public? What if it’s in front of my friends and family? I wasn’t able to drive home for months to Chicago or make long road trips because I was fearful of having enough time to pull off the road. For a few weeks, I even carried a pair of underwear in my purse…just in case.
Let that sink in. And before you judge or question someone take into consideration that they may be battling an invisible disease that is a part of who they are… every. single. day. of their life. Until you’ve been a patient or been given the diagnosis, consider yourself lucky that you get to experience the ignorant bliss of being unable to fathom the pain and constant worry.
While ill-intentioned words leave invisible scars and bring us down… try to challenge yourself and recognize the importance of keeping your head up and being an advocate by compassionately educating those around you.
In the news business you can receive 100 compliments about how great your story was and how awesome you are to watch, but then you’ll receive one comment about how your haircut is awful or that you read too fast…and that rewarding, positive feeling goes out the window instantly. Much is the same when people make comments questioning the way you handle your disease.
Ultimately, when you look in the mirror you know what you’ve experienced and you’ve fought the battles. Trust in your family members, friends, and strangers who genuinely rally around you and care about your well-being. THAT is where your focus needs to lie. Positive attracts positive, drown out the noise.