By: Zal Press
The word “stigma” makes my blood boil.
The session started out with questions about my hospital discharge experiences. For the first 6-8 years of my illness I was in and out of hospital like a revolving door. On discharge I would be visited by a dietician who would give me a standard “low residue” list of foods. Basically stuff to stay away from that would get stuck in my gut and give me an obstruction. The amusing part of this list is that it was the same one year after year and became increasingly blurry as a result of generations of copied copies. I saw this same sheet for almost 20 years.
At some point in the conversation we started on the subject of access and equity of treatment. My medication costs $33,000 a year and I constantly worry about continuing availability of coverage and access to treatment. What will happen to me when I turn 65 in 3.5 years and the Ontario Drug Benefit Plan takes over my medication coverage? Will a debt laden government refuse coverage? Will a bureaucrat decide that it would be cheaper for the system to do surgery than medicate? I worry about those suffering today who will be subject to multiple step therapies before becoming eligible for a drug like the one I’m on. I worry about people who are faced with losing their job and their coverage. I worry about people locked in an abusive job environment because they’d lose coverage changing jobs. Some people say I have too much time on my hands and that’s why I worry. That just makes me worry even more about people not seeing the big picture and not understanding the huge gaps in our so-called “universal” health care system.
The rest of the session is kind of a blur except how it ended up. Somehow the conversation got around to the topic of stigma. And that triggered a very emotional response in me. After I was diagnosed everybody began to look and talk to me differently. There was a period of time where people wouldn’t even ask me how I felt, instead asking my wife “how’s he feeling?” as though I wasn’t even in the room and no longer had a name. As if using “HE” kept me at a safe distance from them. Medicine may have cured leprosy, but not the dissassociation people want to have from people with illness. Eventually my wife got fed up and began responding “HE felt great the last time I felt him!”
My male friends would whisper to each other when making sexual jokes or innuendoes, thinking for the longest time that my illness compromised my sex life and that talking about sex would embarrass me. I told them fantasy stories about having sex in the hospital in order to get them over that.
In all these years of living with a life limiting condition, I’ve witnessed the constant discomfort that people have when confronting a person of difference, either physically, emotionally or spiritually. As much as we learn tolerance, we aren’t socialized to appreciate people for who they are. Our first impressions are how we see them physically. Crohn’s patients are often invisible because we don’t wear our condition on our sleeve, but you may notice one or two searching frantically for a public washroom. But people who are disabled by conditions like Muscular Dystrophy or MS or Parkinsons, disfigured by skin disease or genetics, lost limbs or vision to Diabetes, appear wasted by Anorexia or overweight due to glandular malfunction, are all subject to constant bias and marginalization. People end up being treated differently simply because we’re all so conditioned to embrace a certain prescribed normality. We’re left awkward in situations that don’t conform.
I was overwhelmed with emotion. I wasn’t angry. Just overcome. I’ve read, watched and heard literally thousands of inspiring stories from remarkable people. Stories of victory, of loss, grief and anguish, stories of overcoming great hurdles and the stories of those succumbing. Every time someone shares their story with me it reinforces my conviction in the remarkable purity of the human spirit and how we all have this amazing ability to adapt and adjust to new realities.
My hope is that these genuinely committed young people will grow into prolific practitioners, not only easing personal suffering but by leading society to a new understanding and discourse about the nature of illness. Some day I’m convinced that we will reach a point where we’ll embrace the notion that disease is a natural part of a healthy life and that those with any kind of difference will be accepted for the beautiful human beings they are without stigma and bias.
I was choking up and unable to continue. We seemed to have reached an organic conclusion to the session. After bidding farewell, I left the building unaware of the cool night air, my coat wide open as my blood was still boiling from one word: stigma.
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