In the last few days, three colleagues have admitted to me that they’ve been taking Ambien for years. One has sleep apnea, another suspects he might, and the third has convinced himself he does not. From the correspondence, I think my attention to the condition may persuade one or several of them to get testing/treatment. And that’s just three people I know of. There are probably others who will benefit from my posts about obstructive sleep apnea.
That’s a significant impact from a few hours of my time — possibly a greater impact than thousands of hours I’ve spent on some research projects. It’s reason enough to put in the effort.
But I’ve also benefited tremendously from writing publicly about my health conditions. (Sleep apnea is just the latest. I’ve written about my battle with insomnia and a heart thing too.) The feedback from patients and clinical experts is valuable and rapidly expands my understanding of the problem and treatments for it.
Moreover, it’s cathartic. Encountering a new health problem that brings you into close and frequent contact with our unpleasant health system can be frightening and frustrating. Expressing that is helpful. Finding the humor in it is helpful. Writing is how I do that. This is where I write. You are whom I write to.
Yesterday, a friend asked me if I am concerned about the risks of publicly disclosing my health conditions.
I felt the answer almost before I could reply, “Hell no.” I am offended by the thought of self-censoring. Why would I do that?
Well, maybe some future employer or insurer would deny me employment or coverage, rendering me jobless or uninsured, he suggested. Or maybe disclosure of taking a sleep aid could play some role in some legal proceeding I cannot anticipate, he speculated. These are extremely theoretical and low probability events, at least in my case (YMMV). I think my employment prospects are enhanced, not diminished by the kind of blogging I do, bringing evidence to issues in an accessible way. Writing about my conditions and my experiences with the health system as I address them is just a part of that. It’s personal — when so many of my posts are not — and, therefore, brand enhancing.
I could, likewise, make arguments about why I’m not worried about underwriting. (It’s mostly gone now, but one might worry about its return. Still, I would never conceal my conditions anyway.) And, a legal situation that turns on my taking Ambien for a few nights here and there? I mean, really.
But all of this argument would miss the main point. I am morally offended by the idea of self-censoring. I want to live in a world in which patents can share their stories, publicly, if they wish to. (Naturally, if one wants to keep things private, one should.) I think it’s healthy and normalizing. Nobody should feel they need to live in the shadows. Doing so feeds the erroneous notion that our experiences with poor health are ugly, shameful ones.
Sometimes I know what the morally right thing to do is. It’s the thing that if I don’t do it, I could not live with myself. What I wrote to my friend is, I’d rather be dead than to feel I cannot speak my mind.
* OK, in some cases we might be blamed, if we take reasonably preventable risks.