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’t speak for parents of autistic kids. But I can speak for chronically ill adults, who can behave similarly to those attacking Dr. Rob, and I’m sorry to be blunt, but this is exactly the sort of behavior that results in many chronically ill adults being marginalized, misunderstood, and credibly dismissed as bitter/whiny/incapable/special-snowflakes/pick-your-silent-stereotype.
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.
I even feel like I can relate to some of the frustration from the autistic community, for while CF has no behavioral components, it does have “what the bleep is that?” and many other psychosocial manifestations that can feel like piling on, at times (i.e., angry stare-downs when I park in a handicapped space because I don’t limp/am not old/drove a low-riding, badass car; enduring intentionally loud commentary while having a coughing spasm in public about how inconsiderate I am to be out when I’m “obviously contagious” - I’m not; inevitable awkwardness during body-conscious weight-related girl talk, etc). I’d like to believe that most of the smite-mail and cranky comments he’s getting come not as much from the sense of clinging to victimhood, but feeling – yet again – misunderstood by anyone, let alone someone who is “supposed to get it.” I don’t *agree* with the sentiment, but I understand it.
A very stupid but useful quote that I often use to illustrate my point is from – of all things – Family Guy, in which Peter says to his wife, “I know you’re a feminist, Lois, and I think that’s adorable, but this is grownup time now.” It’s obviously not the dig at feminists that I find so oddly, almost embarrassingly poignant (I am one, after all), but the underlying macro-level sentiment: replace “feminist” with “victim”, or “patient”, or “any other marginalized/underdog group/cause”, and the basic point is that, YES, things SHOULD be different…
But they’re not. So until and unless things change, you have to learn to function and succeed within the reality that is, rather than the ideal that should be. This does NOT mean that you have to stop working to change the reality; in fact, the more familiar you become with the ways in which the system works and doesn’t, the more likely you will be to effect the very change you seek. Until then, though, the sheer fact that things aren’t the way they should be doesn’t give you an excuse to bow out, throw things, and under-perform your own potential.
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.
But I also have to acknowledge that I will never know what it’s like to be healthy and invincible, and then suddenly, majorly, hugely NOT; that to not even have medical bills on the radar, and then have THESE kinds of medical bills dropped in your lap is eye-opening and terrifying; that while my heart and my politics say that healthcare is a right, not a privilege, and that I should be willing to share the phenomenal access that I’ve been afforded with the “least of these”, there is a dark, selfish part of me that is really scared about what that will mean in terms of my own ability to access the premium, instant-access care to which I’ve grown accustomed - and this is old-hat for me, so I really should cut them some slack in coming to terms with their fears on their timetable.
Part of being an adult is getting over the story-topping, the “yes, but”-ing, and the deranged idea that there’s some sort of points scale on which your personal health-hell – or personal anything-hell – can be compared to someone else’s. It’s recognizing that there’s no meaningful way to compare across categories of shitty-things, and that if I can’t even “compare” my own experience to another with the same disease, then I sure as heck can’t expect to compare across disease experiences, let alone LIFE experiences. If we want to be taken seriously, we can’t let ourselves get caught up in a deranged game of “would you rather” – we must do the hard work to remain open and empathetic to the experiences and realities of others, because of *and* in spite of what we’ve been through ourselves. To become hardened to the pain of others, to defensively cocoon ourselves in misunderstanding and isolation, is a most cruel incarnation of allowing CF (or your crappy job, or your loser ex, or your batshit family) to win doubly, robbing us of not just literal time on earth, but the richness and meaning of the time we do have.
So yes – there are plenty of people who cling so tightly to their patient/victim identity that nothing anyone does will ever be good enough. But the vast (and growing) majority of chronically ill adults are not in that camp. I know them, I am “them”, and they are actively incorporating their illness into their daily, adult lives; finding time for pills, treatments, exercise, snacks, insulin, and more; scheduling appointments, attending appointments, following up after appointments, ordering medicines, picking up medicines, searching for insurance, arguing with insurance, and making choices and sacrifices that in their world are simply called “Tuesday” – and doing so successfully, peacefully, assertively, kindly, and with gratitude more days than not.
Which is exactly why I’m so thrilled to see so many patient-parent-partner blogs, and why I’m determined to feature my life, rather than my illness, on a blog that seems it might easily veer towards the later; but why I’m also trying to resist the temptation to e-compartmentalize, and only talk about the news and what I made for dinner. Because ultimately, the life stuff and the illness stuff - they can’t be teased apart, and a greater understanding of that simple fact, alone, would lead to a lot fewer misunderstandings such as those over at Dr. Rob’s blog.
Jessica,
I liked this post. Keep rocking at being an adult.
Amanda
(aka, your old twitter friend Nanos)
Nanos! How are you, old friend? I’ll always keep trying, but I’ve had to kind of just resign to myself that I suck at “the twitter”. If you’re on “the facebook”, hunt me down, though!
Hope you’re doing fabulously. And thanks :o)