Saturday, December 1, 2012

The worst thing about living a lie is just wondering when they'll find out

As I mentioned before, I am living in the P closet. From what I understand, this is pretty common for the early stages, but I'm not really sure why. I guess everybody has their reasons, and I certainly have mine, but I am unclear what the shame or need to hide is all about. There are always folks who protect the privacy of their health conditions, but this one feels to me like there's an extra need for people to bury it from view.



I think in some cases it might have to do with keeping it unreal, like if you tell the world, then you need to deal with it in a way you don't have to when it's secret - a kind of denial. I don't think that's the case for me. I consider myself relatively self-actualized about my handicap, and I think most people would be surprised about my comfortable attitude towards it. That's actually one thing that is weird, the disconnect between me talking casually about something I've known for some time, and the shock that people feel when I tell them. That's something I have done very few times, and it is generally not fun. Oddly, it's most painful for me because I feel bad for them. They are typically much more upset than I am and I feel as though I want to spare them of that. It makes me really uncomfortable to see them struggle to process the news and to find some words to say about it, particularly when I am not really grieving about it. It makes me fantasize about posting an update to some social networking site or announcing it while giving a talk at work, and letting the rest take care of itself.

Another factor is the vague aura of "mental illness". I get the sense that P stands just on the edge of the glow of schizophrenia and depression and Alzheiemer's. As a neurodegenerative disorder, I think Parks all fear that people will see us as being on a downward slide into uselessness or a cognitive fog. If you are reading this, I hope you realize that this isn't true but we still worry about it. In fact that's mostly what it's all about for me. I am trying to get tenure, compete for grants, and recruit people to my group. This is really, really tough and the last thing I need is to give people any more doubts than they already have about my future competence. Will my bosses be reluctant to promote me for the long term? In this tight funding climate, will NIH study sections think twice about backing me for a $2 million 5 year grant? And most worryingly, will graduate students be afraid to join my lab? I show no signs of cognitive decline, which I gather are frequently absent among Parks at my young age. I still have good lab hands, and it may very well remain that way for many years. Nonetheless, I'm afraid of how others may see it.

Another factor that might not seem so obvious was crystallized for me by Michael Kinsley, who was a secret Park for more than a decade. He highlighted the "performance" your life becomes when you have P. I am keenly aware of this every moment I am in public. I am pretty bad at deception, but I feel like I am constantly having to hide my handicaps from the world and it really feels like a performance. This is particularly salient at conferences. The last one I attended was really stressful; so much that I confessed this and why to my former postdoc boss privately. I was reassured by how surprised he professed to be from his observation of my movement, especially from a naive perspective. However things are going to get worse and I don't want to get to a point where everybody can tell and I am the last to know. Recently, I was doing something in lab and struggling at it with someone sitting nearby. God only knows what they thought. It was really terrifying.

That said, Kinsley's key point was that the performance doesn't go away. It changes from performing to convince everyone you're ok to performing to convince everyone you're ok. Before you were trying to hide, and now you're self conscious about everyone scrutinizing you for evidence of decline. "Are you OK?" People who know ask me how I'm uhhh... doing. I don't look forward to it being that way with everyone.

My conversation with my postdoc mentor was really helpful to make me feel better about how people will react and that they wouldn't be as negative as I fear. I hope to someday show people who aren't dealing with P emotionally as well as I am, and people who know nothing about it, that you can live with P and still be a good scientist, or whatever. He helped me give myself the permission to do that at some point, but until then I just have this blog.


7 comments:

  1. Thank you for posting this. There's a weird facet about having a disorder related to the field you work in: you and the people around you have probably seen countless talks on the subject and are scientifically better informed than the general public, but as a consequence they've also sat through the 'here's the awfulness of it all" intros meant to jolt the listener into appreciating why the research is needed. No one ever stops to interject anything about the time between diagnosis and endpoints, different clinical outcomes, or the fact that patients can remain functional and possibly valuable contributors to society long after diagnosis.

    I'm a postdoc with a neuro background diagnosed with MS in grad school. A different situation in many many respects, but I too have chosen not to disclose it (for many reasons similar to those you highlight with respect to the stigma of a potentially progressive neurological disorder in the climate of the intense competition of academic research). I don't like talking about medical issues in general so I thought it would be easy but it has been more difficult than I anticipated. I suspect my PI knows as I had to disclose my medical history to the safety department and once or twice, very oblique things have been said in passing, but we've never discussed it. I haven't been able to shake the feeling that I sold a fake bill of goods when I signed on. It's a weird guilty weight, and I don't even have the added responsibility of trainees looking to me to guidance. I could ramble on and on, my hopes that I'll kick scientific ass and the doubts will fall away, my fancies about dropping something in a talk or response about not making assumptions that a hypothetical patient couldn't be your colleague, the frustrating feeling that were I to talk about my health I'd be seen as either complaining or angling for sympathy...

    Well, again, thanks for posting. Good luck with everything.

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    Replies
    1. Thanks so much for your thoughts. I obviously understand completely. Knowing that there are other people in my situation means a lot to me. I really hope to ultimately be a role model and show that you can be a good scientist with a handicap. Once I get a certain amount of distance on my diagnosis I will have already done it. I'm getting close.

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    2. I appreciate having had a venue to drop a few thoughts into (your posts are both eloquent and resonate deeply with me even though the situations differ.)

      I have to say...by navigating the stress of being an early investigator and the responsibilities that come with it while keeping both a sense of perspective and humor, you're already doing an awesome job of being inspiring. Consider me inspired at least! Thanks much, -s

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