As I have mentioned here before, Crohn’s patients talk openly amongst themselves about the hideous realities of Crohn’s disease but these things are mostly not shared outside Crohn’s communities. Please watch this video in which a Crohn’s sufferer sums up the heinous reality of living with Crohn’s including extremely prevalent “suicidal ideation” which is completely and utterly taboo in some cultures including American culture for whatever reason. Listen to the medical and bodily horrors this woman has experienced, the shared horrors many Crohn’s patients suffer or at least can relate to, and assuming they have been blessed with the gift of imagination can probably imagine they themselves may have to face in the future as a result of their shared incurable, largely untreatable, progressive disease. The Crohn’s experience is literally a bloody horror show nearly beggaring belief — can you blame them for only wanting to tell the truth to other people who are going through the same things? This woman has a severe manifestation of Crohn’s called Fistulizing Crohn’s and after struggling and resisting for years recently submitted to an ostomy surgery and will have an ostomy bag for the rest of her life.
In my experience as a Crohn’s patient, besides the agony of the disease and the difficulty and energy expenditure of finding effective treatments, the ignorant and hurtful things blurted out by friends and family members have perhaps been the hardest thing to deal with. (Oh, and the looming homelessness! But for me at least, the major financial difficulties came a bit later.) The demented things people have said to me started early on and it caused me to perform a snap evaluation of the relationships in my life, as that was all I had the energy for, and I decided I would rather just be left alone. 5 years later, I do not regret my decision to cut ties with almost everyone who I had previously thought cared about me. For some reason, they could not or would not grasp what I was dealing with and their constant drains on my time and energy were making me feel worse.