The person is always more important than the diagnosis

A little over a week ago, there was a bit of an uproar in the cancer community.  Bill Keller, an Op-Ed columnist for (and former executive editor of) The New York Times, took a good hard look at the work of Lisa Bonchek Adams. Ms. Adams has blogged and extensively tweeted (165,000 tweets!) about her ongoing battle with breast cancer. Mr. Keller and his wife Emma both wrote articles examining and questioning the manner in which Lisa Adams has publicly handled her worsening condition. They also compared it to the passing of Emma’s father, portrayed as a quiet, private, peaceful end of life.

Two converging points became salient during the course of reading these articles (Emma Keller’s has since been removed) and others that reported the forceful reaction, mostly negative, to the Times piece.  First, the manner in which Americans handle premature end-of-life is portrayed as much more clinical and hospital-antiseptic than our British counterparts. Put aside for a minute Mr. Keller’s absurdly small sample size and mistaken assumptions that all cancer patients live out their final days kicking and screaming in the oncology ward for a miracle treatment to lengthen life. Does our culture spend inordinate resources extending life by an indeterminate length, especially if those days are mostly spent incapacitated or otherwise without contribution to family and society? You know what – hold that thought for a future blog.

More relevant for many of us is the manner in which illness is handled publicly – serious, chronic, and terminal included. My personal stance on this may seem pretty obvious, but it is not as simple as posting blog entries or Facebook status updates. There are real mental and emotional barriers to putting yourself “out there” that even the most open of us face — not to mention how to handle the numerous modes of communication available today. 

Exposing a medical condition isn’t about a blog on or a following an account on Twitter. It oftentimes means choosing between tightly controlling information and those who have access to it, or posting sensitive health information without ways to keep it from being disseminated. It is medical gossip for the 21st century, complete with forums to view and comment. Not every person has the mindset to expose him or herself to public scrutiny, especially when the storyline involves literal life or death consequences. 

What complicates this decision is how “the world” views and interacts with you, the individual.  Even if the world for some patients is a small handful of family and friends, putting out medical conditions for that public’s consumption offers the opportunity for others to react, to judge, to over-(or under-) step boundaries. It changes how people see you – for me, it has been overwhelmingly supportive, but there are certainly times when people treat you differently simply because you are sick, not because it is relevant.

Case in point – a college friend and I got into a slightly contentious debate over sports teams. I am an unapologetic sports antagonist, and he didn’t like it and called me out. Part of what he said made me pause and reflect: “Just because you’re sick doesn’t give you the right to be a …”

While I disagreed with his viewpoint in our little debate, the caveat thrown in there was really what hit home. Does battling illness mean that you are forever changed in the minds of others, whether you like it or not? That’s not a question that most new patients would ask themselves upon sharing a new diagnosis. In this age of instant reaction, once something is out there, it’s very difficult to “unshared” it – disease or no disease.

Lisa Adams has the right, of course, to broadcast whatever the heck she deems appropriate, and now has the tools to do just that. Bill Keller also has the right, and the means, to question that broadcasting of someone’s publicly-declining health. And in the end, every one of us have the right to decide if we want to follow along on someone’s journey, whether it leads to improved health or an unfortunate early demise.

Whether you are the one broadcasting, questioning, or following along, remember the words you read are the slice of a life that has taken a shattering turn. They may represent the person sharing them at that moment, but they do not define the individual. There will always be more to the story, and before adding your own two cents, it is a good idea to see the bigger picture. Because no matter how serious the disease, the person is always more important than the diagnosis.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »