Briefly: A variation of this post was originally published in 2011, almost 2 years ago to the day, over on my CF-specific blog (currently undergoing a makeover). Since my original post, Dr. Rob has kind of become a “thing” – he’s a big fan and proponent of EMR (electronic medical records), is at the forefront of initiating the Direct Care model for his primary care practice. He’s been featured on an episode of This American Life. After a brief-ish hiatus, he is back blogging at the retooled Musings of a Distractible Mind. Obviously, the fervor over the original post has since died down, but it’s still worth checking out.
I’ve made a few edits here and there (mostly just updated chronology), but the basic meat and potatoes are the same. It sparked a good bit of thought and discussion the first time; and I thought it apropos to crack open the vault and rehash it here, as unfortunately, while there are a startling and humbling number of people in my life alone going through some legitimately awful, gum-on-the-shoe-of-life situations, there seems to be an equally rising tide in the ebb and flow of patient attitudes back towards some serious Special Snowflake Syndrome (and a concomitantly wicked epidemic among otherwise healthy folk to which many of these same principles apply). Carrying on…
…Dr. Rob hosts a blog titled Musings of A Districtable Mind. He’s a PCP (primary care physician, for all you part-time patients) that blogs about what it’s like from the doctor’s perspective – with “it” ranging from patient interactions to trying to keep his practice afloat in a medical marketplace that favors specialization to the bass-ackwards world of medical billing. He also cares a lot about helping patients get the best care available, regardless of and within the system that is. To that end, he posted several well-written and thought-provoking posts – one written to chronically ill patients as a “help me help you” attempt regarding effective communication with their doctors; and another on the perspective he has been afforded over many years of treating autistic patients, on both the condition specifically, and life in general.
And he was utterly and completely flamed by folks from both camps – the camps he was trying to help and uplift, respectively.
I can identify with the underlying frustration behind the flaming. When you are chronically ill, a trip to the ER, for example, is disproportionately anxiety-inducing. It’s a one-two punch of both “whatever is acutely wrong”, but also having to educate/argue with/convince ER physicians whose job it is not to be a walking encyclopedia of every random genetic disorder and its manifestations; but who, in this moment, could really help you, and themselves, if they would just trust that it is your job to be the said walking encyclopedia about this random genetic disorder, and its specific manifestations in this body – so please, Dr. ER Roulette, M.D. – either get over yourself and call Dr. My Specialist, who I swear won’t mind, or otherwise trust what I’m saying and treat me accordingly.
Part of being an adult, I’ve gathered, is understanding and accepting that, erm, shit happens. Do I get a pang of frustration and “You don’t get it! Let’s trade!” when I hear someone complain about how the enormous expensive of their follow-up care for a brief-and-generally-successful cancer diagnosis and respective treatment – when the total out-of-pocket for that follow-up care has been less than I have to pay annually in drug co-pays alone? When she had a childhood, adolescence, and college experience of healthy and normal – interrupted by two absolutely and indisputably hellish years that I in no way minimize or dismiss, but has thankfully gone back to a daily standard of ”healthy and normal”, and can refer to the worst of her illness in past-tense? Do I bite my tongue and walk away from the keyboard when I see someone vehemently ranting about his opposition to healthcare reform, despite all he’s been through, out of a fear-based desire to keep his favorite practitioners close to the chest and his wait times short? OF COURSE I DO.