For those who may follow my blog you’ll notice I’ve taken a brief hiatus from posting recently because well I needed a break. This informal one man operation is tricky when balancing current significant health issues, a job search, ongoing research projects, school preparations and family obligations. Also I just needed time away from thinking about some heavy issues related to IBD that I’m facing- I’d encourage others to do the same. Nevertheless, I’ve been thinking about ‘acceptance’ these days- a theme many could probably benefit from ruminating- and I think it may be time for an explanation on how I’ve ‘accepted’ a chronic disease. I’m making a concerted effort to keep this under 700 words so here we go. Have I accepted Crohn’s disease?
Not at all.
For the majority of my life now I’ve awoken in the morning energy deficient, cognizant of the location of the nearest bathroom, wondering when/what/how much I could eat in order to be productive, tender from apthous ulcers, having the chills and experiencing abdominal pain. This reality is by no means is unique to me-all patients with IBD experience similar issues (+/- a few) throughout their lives. It also doesn’t bother me to acknowledge this fact because I have an awesome life by anyone’s standard-healthy or otherwise. However after a series of conversations about the subtle distinctions I believe exist between acceptance and coping I’ve come to realize that acceptance is a privilege of those not currently carrying the diagnosis of a chronic disease. I would argue that the responsibility and burden of acceptance rests upon family members, friends and significant others of those with a chronic illness. This ongoing acceptance should not be trivialized when you consider the harsh realities these people endure when caring for their sick loved ones whose disease course can change lives at the drop of a hat.
As an adolescent/child with IBD I never once thought about ‘acceptance’. Sure I wondered whether my peers faced similar difficulties and at times naively wondered why me, but in retrospect my resolve to fight to become a productive member of society has been unwavering. Now as an introspective adult patient I know that I will never accept Crohn’s disease, I will simply learn to better cope with it. I will endure the ebb and flow, I will adapt to changes in my appearance/functional capacity/relationships, I will assess the impact of said changes and I will always fight to better myself, my community and maybe by luck someday society. Why would I ever accept Crohn’s as something I am more equipped to bear versus someone else, something inevitable or worst of all something destined? I wonder if I accepted Crohn’s through one of these perspectives where would I be in life?
As the only child with a chronic disease in a family of 10 children I’ve had to deal with my share of difficulties, something I’ve tried to do without complaint so as not to burden others I care about. I know these struggles weigh on my family but I always think of the things I, as the patient, can control versus what my family members can control. I can control my attitude toward inevitable hurdles and how I adjust or compensate for issues. The bumps in the road and my compensatory actions are things family members obviously cannot control, least of all understand-it takes having the disease. In a word I can control how I cope. What they can control is their level of and dedication to acceptance. Do they practice acceptance by helping me stay positive or by spending Christmas 2014 in the hospital with me (as my older brother did) or do I pick up on resentment under the unrelenting stream of medical bills and emotional strain an individual with chronic disease can be on a family. So please don’t talk to me about acceptance-I cannot and will not ever accept Crohn’s disease. Practice acceptance by helping me think outside the box for coping strategies or taking the time to talk with me about things unrelated to IBD. I want to thank my family and loved ones for being the most profoundly accepting individuals I could ever walk through life with.