Editor's Note: I wrote the original draft of this quite some time ago, but wasn't quite ready to publish it. It's still somewhat erratic, but I think it's important to share. The fervor over the original post over at Musings has since died down, and in an unrelated decision, Dr. Rob has actually taken a hiatus from blogging altogether. The "previous post" I reference is one from this summer, titled "Unicorns, Leprechauns, Adults with CF, and Other Mythical Creatures" which I've hyperlinked here, as well as embedded below. I'll be traveling tomorrow, and likely won't have time to post, but this should be more than enough to chew on in the mean time. Happy Thursday, folks!
It seems that I've become a rather passive blogger, lately, just reacting to the original posts and thoughts of others rather than generating my own. Never fear, dear readers, I have several "in the pipeline", but I'm also trying to use my own blog for my own reactions rather than just posting essays on other people's comment pages. Ergo, yet another comment-turned-post for today.
If you don't already follow Dr. Rob over at Musings of A Distractable Mind, you should. 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. Recently, he's posted several well-written and thought-provoking posts relating to the former - one written to chronically ill patients as a "help me help you" attempt regarding effective communication with their doctors, and another on the perspective on both the condition specifically and life in general he has gained over the years treating autistic patients.
And he has been 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 currently attacking Dr. Rob, and I'm sorry to be blunt, but this is exactly the sort of behavior that KEEPS chronically ill adults marginalized, misunderstood, and written off as bitter/whiny/incapable/pick-your-silent-stereotype.
I can identify with the underlying frustration behind the flaming. When you are chronically ill, a trip to the ER is disproportionately anxiety-inducing because of the one-two punch of "whatever is acutely wrong" PLUS having to educate/convince/argue with 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 us and themselves if they would just trust that we do have to be the said walking encyclopedia about this random genetic disorder, and its specific manifestations in this body, so please either get over yourself and call Dr. 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 socially misunderstood 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/drive 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 the dad says "I know you're a feminist, Lois, and I think that's adorable, but we're grownups, and it's grownup time." It's not the dig at feminists that I find so oddly poignant (I am one, after all), but the overall 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, and 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; but 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, if you will. 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 two crappy years and has gone on to live a healthy, normal life and can refer to the worst of her illness in past-tense? When he vehemently opposes 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 would 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 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 expereince 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 empathic 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 to win doubly, robbing us of not just literal time on earth, but the richness and meaning of the time we do have.
Such a reaction may seem ironic, given my last post about my perception of the failures of the CFF regarding supporting the adult population. However, my point in my last post was *not* to sit in the corner, suck my thumb, whine about being misunderstood and throw things. My point was the exact opposite - that I know by example (and knew in my gut before I had "proof") that there are many adults who must actively incorporate CF into their daily, adult lives, finding time for treatments, snacks, and bathroom breaks, making choices and sacrifices (such as IV's instead of a vacation) - and do so successfully.
I argue that if the CFF is going to venture into the "represent and support" terrain of patient advocacy rather than sticking to finding and funding research, they should do so more holistically, and that there are plenty of healthy, active, positive adults with CF waiting in the wings (or often banging down the door) to step up to the plate and help them do 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 majority of adults I know who take issue with the CFF on this, regardless of their mode of expression, are not in that camp. To the contrary, they really, really, really want to help the CFF in this regard, and are frustrated that their offers to help are met with ambivalence. It comes from a place of activism, not victimhood: "Speak for me meaningfully, speak for me accurately, or don't claim to speak for me at all - let me speak for myself."
Which is exactly why I'm so thrilled to see so many patient-parent-partner blogs, part of why I've recommitted to this one, and why I'm determined to feature my life, rather than my illness, on a blog that seems it should be focused on the latter. Because ultimately, 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.
