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Very public health

Watching the remarkable Xeni Jardin tweet her mammogram and cancer diagnosis, then blog eloquently about it, then crowdsource opening up her own MRI data makes me ask: Why are we so secretive about sickness and health? And what do we lose because we are?
The answers to the first questions are fairly obvious. First, we keep our sicknesses secret, we say, because we fear we could lose insurance. Except insurance companies force us to reveal our medical histories anyway. And let’s hope that Obamacare — may it survive the Supreme Court — succeeds in outlawing the denial of health coverage due to preexisting conditions. Next, we fear that we could lose jobs. Except in cases where a condition would affect job safety, shouldn’t employers be told that they cannot discriminate on the basis of health? Whether or not society chooses to address these issues through legislation, my point is that it’s possible to do so.
The other reason we keep sickness secret — the bigger reason — is stigma. We don’t want people to know we’re ill. But in this day and age, why should anyone be ashamed of being sick? To be clear, I am not saying that anyone should ever be forced to reveal health information. But why should our norms, stigmas, and economic considerations force us not to reveal it?
Imagine if we didn’t feel compelled to hide our illnesses. Imagine if we could be open about our health. What good could come of that?
We could learn more about correlations, which could yield information about causation and even cures. Given large data sets, we could find out that people who get a disease share common behaviors or characteristics. We might gain the opportunity to discover an environmental cause to a local outbreak of, say, breast cancer, enabling a community to fix the condition and prevent more cases.
Of course, I want to emphasize the conditional: correlation *could* help. One data point is never meaningful: That I’ve contracted one heart condition and two cancers since being at the World Trade Center on 9/11 is meaningless — unless there are many others in the same boat, and even then, one mustn’t jump to conclusions about causation. Still, more data is always better than less.
With openness about health, we could do a better job connecting people who share conditions to get information and support and each other. I am on the board of Learning Ally, formerly Recording for the Blind and Dyslexic, and at our last meeting, I was struck by the barriers that stigmas put in the way of young people getting the organization’s help. I heard how getting our software on iPods has helped more kids use the service because they no longer have to carry around a special device that marks them as different — stigma. I heard a mother say that school officials warned her that her child would be labeled — stigma — if she got him appropriate services, but she said she’d eagerly embrace the label if it got her son the help he needed.
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