Posted on June 4, 2016
“I’ve always been okay with the stuff that has happened to me, but some people have real difficulties accepting these things so I just want to say this. No one will know unless you tell them. People who know will still love you and still find you beautiful.Your illness is nothing to be ashamed or embarrassed about ” – Aimee Rouski, Facebook post May 25, 2016
Other people have difficulty accepting these things. Other people. As in, those who DO NOT have Crohn’s Disease. Other people have difficulty accepting these things.
I’m just going to keep typing her words until, hopefully the light shines on those who have difficulty accepting someone else’s difficulty? Other people have difficulty accepting these things…?
I don’t know Aimee Rouski and only saw her post after it had all gone viral (and read this terrific piece by Tess Koman). Good Lord, I have enough trouble accepting my own barely – existent issues, much less having to deal with what other people think about a chronic illness. A so-called invisible illness.
Except Crohn’s isn’t invisible.
Your friends notice when you don’t drink with them. Your friends notice when you don’t eat with them. They notice when you’re trying the gluten-free thing. And then not. And then when you cut back on coffee. And then not. When you’re too sick to go out. When you’re exhausted. When it’s time to get with a lover and you have an colostomy bag. Or a surgery scar. Or both.
Crohn’s, and other forms of IBS, run the gamut. Some folks have mild symptoms that, in my case, seem to show up in times of stress. Others have daily pain and must take various medications that may or may not help (didn’t work for me, Asacol made it worse). The final option, when the internal organs – intestines, colon – are just wiped out, is surgery.
I have a weird situation in that this has been a reverse process. I was born premature and had an intestinal blockage within a few weeks of my incubated life. I had surgery, wore the colostomy bag for the first year of my life then surgeons took away the bag and closed the site. I, of course, remember none of this. I have a lengthy, horizontal scar across my middle and some mild symptoms from time to time My parents always told me that my scar saved my life.
Symptoms got noticeably worse in my mid-20’s and, long story short, I had my first colonoscopy. The doctor said “Crohn’s,” handed me a pamphlet and a prescription for Asacol, and that was about it. I didn’t know what it meant, what were the long term effects, and how did all that surgery as an infant impact what was going on today?
I went to two other doctors and asked the same question: how did the surgery I had as an infant affect this diagnosis? No one really had an answer.
in the meantime, I worked on changes in my diet. Symptoms appeared to be gluten-related (a decade before “gluten-free” was trendy) but I tested negative for Celiac’s. Still, I felt better when I cut out the daily intake of bagels, pizza, and tofu vegetarian fake meat products – full of gluten. I was one of those very unhealthy vegetarians. I began eating meat again and eating healthier all together. I found this book, Listen to Your Gut by Jini Patel Thompson, which I followed only in part. It worked for me. If you have Crohn’s or IBS, please run any alternatives by your doctor first.
Crohn’s is not invisible. It just hasn’t been recognized. As with many things, they have been there all along. We just haven’t seen it, we haven’t recognized it. Without recognition, we can’t accept the situation as it is.
Ms. Rouski has spoken amazingly well. Beautifully.
“…we should accept and love ourselves no matter what…”
— Aimee Rouski