Gut Feelings: Seeing it in Writing

A few weeks ago, I decided that it would be helpful to read a biographical book written by someone with some form of an intestinal condition.  I was tired of feeling alone in my condition; anything relevant with depth would hopefully meet my needs.  I came across a book called "Learning Sickness: A Year with Crohn's Disease," which I picked up at the local library.  It's a relatively short book, 187 pages, written by an English professor working at Assumption College in Worcester, MA.  The author, James M. Lang, was diagnosed with Crohn's disease in 1996 when he was a graduate student and new father.

Before I go on, I want to clarify that I personally don't have Crohn's disease.  I didn't state what condition I was born with in my previous post.  While I have no intention of describing my condition in depth at least for the time being, due to the stigma surrounding it, if you are so inclined you can read more about what I was born with (high I.A.).  It's tough to even reveal that!  But based on the positive responses I've received so far, I feel just open enough to share the link.

While Crohn's disease is very different categorically to high I.A., there are just enough similarities in symptoms, to the point that I felt a distinct connection to Jim Lang.  Crohn's disease is a chronic inflammatory bowel disease that is very painful.  The disease affects different parts of the gastrointestinal tract, and its impact varies greatly between individuals affected by it.  Crohn's tends to "come and go," in the sense that it can go into remission and flare up again for weeks, months, or years at a time.  Bowel movements are frequent and nearly uncontrollable.  There is no "cure" for Crohn's disease.  Crohn's can be treated, though, and if caught early, the lifetime impact can be lessened.

Jim Lang's book focuses mostly on one year of his life in which his disease was at its worst.  His book moves forward and backward in time, as he discusses when he was first diagnosed with Crohn's and recalls other significant times in his life that were negatively (or positively) affected.  I felt most emotionally connected to Jim's story when he discusses the bad moments and close calls of having "accidents."  Most people really have no clue of the major stigma associated with these. 

There were two major points that stuck with me from Jim Lang's book: a) patient advocacy and b) religiosity among those with chronic illnesses. 

Without a doubt, it's critical when you have a chronic illness to be your own best advocate in the medical system.  Doctors are not always right, and you will likely know your own body better than any doctor would despite the most advanced technology.  When you're in conflict with a doctor's suggestion or opinion, and you absolutely know you're right, you have to stand up for yourself.  With that said, doctors definitely have access to all of the tools and training to help you.

Jim's other point - that he believes many people with any kind of chronic illness are religious people - was intriguing to me.  Certainly, if you're dealing with a lot of pain and suffering that you know won't go away throughout your entire life, you may look to a higher power.  I myself am not religious by any means, but I consider myself a spiritual person (I'm drawn to the philosophies of Taoism and synchronicity - but that's for perhaps another post!).  I was an atheist up until the time I had my first bowel obstruction in 2000.  The combination of the trauma I experienced, along with the love that I felt from my friends and parents, made me think a lot more about what it means to be alive.  Life is truly amazing and worth cherishing and reflecting upon.

I do think that Jim Lang over-sentimentalizes some things in his book.  There are other factors that come into play in the way he deals with Crohn's disease, and those factors won't necessarily be as relateable to others with Crohn's or other intestinal disorders. 

But the major sticking point about his book is that he wrote his thoughts and feelings down about what it's like to deal with his disease.  As far as I know, there are no other biographical books about Crohn's, though there are quite a few practical and medical books on the topic.  His book hits home, and you see the humanity that overshadows the disease.

That's what is missing for people born with I.A.  No one, to my knowledge, has written a book or even a lengthy, in-depth description of what it's like to deal with the consequences of this throughout life.  Someone should do that.  Part of me would love to attempt a book, though I'm not sure if my personality lends itself well to such a long-term endeavor. 

As I begin to hear from new parents with children born with I.A. - and even from other adults like myself - it's becoming all too clear that we've got to break through the stigmas and barriers.  We're not alone.  The stories need to be shared.  Let's talk about things.  Let's see it in writing.