May 30, 2010
Woops:
Hi there. I can relate to your stories of those closest to you not understanding what u are up against as my closest friends could never understand why I could eat a Box of “Chocolate Devil Dogs” with NO PROBLEMS but the mere prospect of eating Popcorn at a Movie Theater could put me in a Hospital!
More importantly, before I was diagnosed with Crohn’s Disease at the age of 21 or so (I am 47 now), I complained of SO MANY different symptoms that I seemed “Crazy” as these problems were completely “inappropriate” for an athletic 21-year old to be complaining about. But then Fate intervened as I then had my Wisdom Teeth removed and after the first few days of Swollen Cheeks everything healed fine until a few weeks later when my Cheeks once again swelled up and I looked like I had Golf Balls in my mouth – YET AGAIN! This “Swollen-Not Swollen” routine went on for MONTHS and the doctors thought I had some immune-system problem but because they couldn’t prove it - even then – they didn’t believe my complaints of occasional obstructional stomach pain so bad that I collapsed because I couldn’t “bear down” on it, joint pain that made it difficult to get out of bed some days, unpredictable extreme lethargic feelings, etc.
At that point in time, my FAMILY and my local GI doc made me see a Shrink because if the doctors did not see it – my Family refused to see it. I never doubted FOR A SECOND that there was something seriously wrong with me but I played along and went to the Shrink. I also understood my Family’s position and I just prayed that one day I would prove them wrong. Well, Fate stepped in again, as a few months later I ate Flavored Popcorn at a corporate function and a few hours later I passed out from the aforementioned obstructional Pain, got rushed to a Hospital and during that Hospital Stay I was diagnosed with Crohn’s Disease. When the Doctor started explaining Crohn’s Disease to me he handed me some pamphlets about the Disease which were apparently published by the CCFA. As I read the information on the pamphlets and I saw that it described my symptoms SO SPECIFICALLY, I felt exonerated – almost as if I had been in Jail and the Person who “Did the Crime” had come and stepped Forward admitting his Guilt. However, I NEVER FORGOT THE FEELING OF PEOPLE DOUBTING ME and I also learned to NEVER DOUBT MY BODY.
In your case, it sounds like you need to give your loved ones some Written Materials about the Disease and make them more familiar with its effect on your Daily Life and on the Life of others. Much like the Family Member of an Alcoholic worrying about that first visit to the Rehabilitation/Addiction Center, just because YOU have a problem with certain foods doesn’t mean THEY have the same problem. They need to understand THAT and they need to also understand that SUPPORT is like MEDICINE in Crohn’s Disease cases and STRESS is the opposite. You need them on your “Team” and they need to know that. So, it sounds like they just need to be better educated and if you’d like a list of Reading Materials and whatnot please send me a Private Message and I will get you useful information as I am intimately familiar with the types of Materials you need.
