Thursday, 30 May 2013

The Pecking Order of Disease

Take the right genetics, combine with the right triggers, a dose of family dynamics, add unattainable societal standards of beauty, the culture of "thin" and you have a recipe for an eating disorder. A lifestyle? The result of willful bad choices - that with a bit of pull-yourself-up-by-your-bootstraps tenacity would be snapped into submission? A disease? Believe me, nobody thinks that last one.

In all my years inside the health care system - what I learned is that every illness, every organ, has a pecking order. This is not a judgement - just a fact. Look where the majority of research dollars go and how the health care budget is divided. Cancer has more cache than syphilis - an extreme example and may I assure you I am not poo-pooing cancer research, I am simply saying that we prioritize our expenditures in certain ways - because there is always a judgement involved. And throwing money at people who you might rightly predict have a strong probability of relapse, compared to a "clean" investment where through a targeted screening program you could improve survival rates for say - prostate cancer - which would you choose? We are comfortable with the illnesses that we can manipulate with drugs, devices and procedures where parts are taken out or new parts put in. We are less enthusiastic with the big black hole that things like eating disorders represent. Nor do I suspect people fully appreciate the significant toll they take on the body and the associated costs, a toll which obviously grows more significant the longer they drag on. 

In the beginning I must admit I was focused not on the consequences. But it didn't take long after dipping my toe in the treatment pool and exposing myself to other patients before I was sure it would kill me, a feeling that would grow more deeply buried over time. If you look at websites with memorial pages for people with eating disorders, women and a growing number of men, you might be surprised to see how many names appear. I also don't suspect I imagined for a minute in the early stages that I might continue to function - not optimally of course - but live a life for 32 more years before the full consequences would reveal themselves. A life that was always clouded by the image I had in my mind of what I would have been, the risks I would taken, the mistakes I wouldn't have made, the professional mountains I would have conquered, the relationships I would have embraced more fully - had I been well. In so many ways it has felt like when I was 16 the life that I might have otherwise led, died, and while my body somehow soldiered on - I have had a 32 year dress rehearsal for the fate I now face.

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