Choosing Awareness

May is Cystic Fibrosis Awareness Month.

Due to the timing of my recent hospitalization and course of IV's, I've inadvertently been "advertising" the in's-and-out's of at least this one facet of CF life on Facebook and Twitter already. In the midst of minor health blips like this, I find social media both a convenient way to keep beaucoup people in the loop when I go MIA and a fun way to fend off the inevitable tedium of  hospital "hurry-up-and-wait". After the dust has settled, however, I always have a little creeping self-doubt that I come across as whiny, wimpy and ungrateful, rather than cheeky, sarcastic and bored, when I review the scrolls of "and now I'm doing THIS!" updates related to my health that have undoubtedly caused a few people to hide me from their newsfeeds (though, in my defense, I don't play Farmville).  

So I feel a little weird about doing my "Maydays of CF" blog posts as originally planned. I'll post a few in the days and weeks to come, partly because I figure if I haven't been hidden, or defriended, or unfollowed by now, folks must at least kinda sorta care and/or wonder a little bit about how all of this "CF stuff" goes down, and partly because I'm really trying to challenge myself regarding my fears and insecurities about stepping up as a true and consistent "face of CF" (more on that later). 

But for now, there is one part of "Cystic Fibrosis Awareness" that I feel I must address, personally. One of the battle cries of CF Awareness (or that of any chronic disease, or policy problem, or other unflattering human situation) is that "for those with CF, awareness is every day" or "for CF patients, CF Awareness isn't limited to just one month." It's poignant, and sound-bite short and catchy, and makes an excellent point. I agree with the sentiment 100%. However, though I will continue to beat my drum about the very real, very significant, and largely ignored psychosocial aspects of living with CF (and chronic illness/disability), I want to take a just a minute here on my little corner of the interwebs to shine a light on - and express my infinite gratitude for - another largely ignored, yet bittersweet CF population. 

Those who do have a choice, and who choose to be "CF Aware". We patients, as I've mentioned, do not have a choice. CF is what it is, and it's not going anywhere. If we are alive, we are also CF, at least in part. It's ugly, it's painful - but it's simple. In this blitz of "CF Awareness" - of statistics, and facts, and soundbites, and diagnosis stories, and "day in the life" profiles, and "the pills I take every day" photos - I also want to turn awareness on its head; to focus not just on the struggles and complexities of the patients, but of those who surround the patients.  Those who have the complicated and undoubtedly tempting option of turning their backs - technically, on us, but truly, on the helplessness and fear and frustration and guilt that are part and parcel of their precarious position as very-close-but-not-inside CF - and choose not to do so. 

The friends who gracefully deal with last-minute postponements and cancellations due to the unpredictability of our symptoms; the families who step up and help out when need be - or equally helpful, step back and give us space despite their own desires to hover close; the teachers who  not only extend deadlines and email outlines, but send a quick note just to see how we're feeling; the employers who, while technically, legally prohibited from firing us because of CF, go beyond what's merely required to what's human, and allow us to remain in jobs we love (or even just need) and give us the flexibility to perform to our best, even when it's not convenient or cost-effective. 

And yes, the physicians and nurses and pharmacists and lab techs who choose to fight this disease with us - who answer our emails late at night and on the weekends, who choose to remain on "the CF floor" for years despite the literal and emotional difficulty of the work, who wink and nod as they hand us stockpiles of drug samples or expensive adhesives, who remember our allergies and preferences and fears, who keep our atypical medicines in stock for quick refills and place overnight orders for the new ones, who aren't offended when we point to specific veins we want used or double check the labels on our delivered medications, and who generally remain invested the care of a patient population that is medically, pharmacologically, intellectually and psychologically challenging to treat (but never cure), in all the best and worst ways. 

So yes. Let's all please, please, please raise awareness of not only what CF is, but why it's so important to cure. Let's be vulnerable to the point of discomfort in exposing the many ways CF affects our lives as patients. But as we ask our friends and families to help us in this fight  against both the illness itself and the ignorance surrounding it, let's also take a moment to thank them for choosing awareness, for choosing CF, for choosing us. 

"I Write My Business All Over the Internets, but How the Heck Do YOU Know THAT?" and other adventures in negotiating privacy

I started writing this as a quick comment to the latest post by bloggy maven Cystic Gal, but it got long and personal, for a comment, so I decided to transfer my ruminations over here.

One of the biggest struggles I have with this stupid disease is my often conflicting, confusing, hard-to-read-because-even-I'm-not-sure-most-of-the-time stance on who I want to let in on what's going on with me, health-wise, and how much I want them to know. I am a proud person. Not in the grade-school, my-future's-so-bright-I-gotta-wear-shades, healthy-appreciation-of-my-worth-as-a-person variety, but in the "who? me? problems? BAH!" variety.

In spite of myself, I tend to put far too much effort and energy into keeping everyone around me snowed into thinking, as the kids say, I've got my shit together. I've been this way at least since middle school, and I always assumed everyone just saw right through my act, rolled their eyes, and knew it was all for show. Which is why I would then have the audacity to get upset that my friends and acquaintances didn't telepathically understand what I was going through, or even that I was "going through" anything at all.

What I didn't understand until recently was that most everybody was drinking my kool-aid, to some degree. This is all very elementary social psych, I'm aware, but it didn't functionally click that people are generally going to just believe what you tell them and move on, not take it apart piece-by-piece and try to discern some hidden meaning from an otherwise casual conversation. (Except if you are female and 13, but thank-you-Jesus-thank-you-Jewish-God-thank-you-Oprah, I no longer am. 13, I mean). For example, if you act, live, carry yourself and speak as if you are simply too busy and fulfilled to trifle with such nonsense as finding and developing a meaningful relationship with an interested member the opposite sex, said member(s) will tend to take you at face value, call you "intimidating" or "a strong personality" and leave you alone. Ya know, hypothetically speaking.

When it comes to my health, however, this whole pride issue becomes tenfold. I am, as a general rule, intensely private about my health. There is a small group of family and friends that I am truly honest with, and I really want those people to know, and if I'm honest, I really want it to matter to those people. Other than that, I tend to swing back and forth from feeling that it's some sort of existential duty of mine to share with the world what life is like with CF (as if I could speak for all of us in the first place), spread awareness, yada yada, and intensely craving the normalcy that comes with all but your closest circle simply assuming you have bad allergies or bronchitis, purell-ing, and moving on. I vacillate between wanting everything regarding who-knows-what-when-how on MY terms, because damn it, I'M the sick one here!, and recognizing that CF and my experiences with it create a fair bit of collateral damage as well, and it's unfair of me to deny those around me their experiences of this, and their ways of coping, as well.

Or is it?

At what point do I draw the line between being a good friend/daughter/granddaughter/niece/etc, and allowing people to "experience" my CF in their own way, and standing up and acknowledging that my status as the actual patient doesn't give me license to be cruel and selfish, but it does mean that THEY should be taking how their experiences with MY disease affect, well, ME?

Do I really owe people an explanation as to why I am (sometimes) comfortable spilling my guts, in detail, for (theoretically) all the world to read, but yes, it is STILL overstepping a boundary to forward on to your entire prayer chain/gossip list and extended-families-thrice-removed email updates that were very clearly intended only for those listed in the address bar? Is it really my responsibility to "make amends" with YOU after spending three hours writing the kindest, most understanding email I knew how asking you, for the fourth time (since I've been counting) to please, please please respect me enough to respect the fact that I want to keep certain details private, even if you think I'm crazy for doing so, and get no response aside from months of tension, tension that then spills over into relationships I actually DO care about, because they care about you? At what point do I get to stand on a chair and scream, "Yes! This time, about this, it IS all about me, especially where YOU are concerned!"

Do I really have to apologize for the fact that my personality lends itself toward social hibernation when I feel bad, and so while I really, genuinely appreciate the offer, no, please DON'T visit me in the hospital. Really. Do I have a right to resent the fact that because you are upset and scared, I am then guilted into allowing you to visit anyway, peering at me like a carny act, inspecting me for signs of illness, or improvement, or lacking hygiene or attention to vanity, for details to report in your ever-inconsiderate and violating email chain, when we're really not even that close when I'm healthy?

Do I have a right to be angry that, when I'm supposed to be healing, I'm wracking my brain trying to come up with logical equations and justifications as to why I want the company and attention of certain friends, but neither from certain relatives? And six months later, after I'm better and trying to live in the present and focus on how great life is, right now, for now, because really, it's a matter when not if things will tank again, and I see you, person-who-was-wrongfully-forwarded-too-much-information, what degree of politeness do I owe your obviously genetic voyeurism into the details of my current medical status, and how long am I obligated to indulge you and attempt to gently change the subject before simply walking away in frustration?

And after I do snap, what degree of guilt is appropriate for the way I've just treated you, given that you didn't ASK to be inappropriately forwarded information, and were simply trying to be kind and make conversation in an awkward situation, given that we don't really know each other? Am I allowed to then resent you a little anyway, simply because you know so much about me for someone who knows me so little, and through no fault of your own, represent to me both the constant and specific violation of my privacy, and the greater, more general lack of control I have over even this aspect of my chronic illness?

To what degree of uncertainty and inconsistency am I realistically entitled in this realm? Is it better to be honest and consist ant, but cruel...IE, no, close-on-paper-relative, I don't want you to know anything or visit me, ever, because you've proven you can't be trusted and anything about me is really all about you anyway, but yes, friend-of-11-months, come on over! -

Or is it better, or fairer, or kinder, to be wishy-washy and inconsistent, but trying, trying, always trying to remember that at the very least, people I love love certain other people, and therefore keep trying, trying to negotiate some way to tolerate them, and this, knowing that I will always have my good days and bad days and because of this, will seem unreasonable and unpredictable and inconsistent and unfair?

Truly, I'm not sure which is kinder...I know which would be easier, but the nagging, tugging, uuuggghh I get when I think about actually just whacking through the proverbial bush, clear-cutting anything and anybody that doesn't make me feel good, leads me to believe that can't possibly be the answer. But if I consistently find myself tying myself in knots over the ways I choose to handle my own disease are affecting certain other people, who repeatedly refuse to even engage in conversations on how we can negotiate this and meet halfway, and who ignore my polite requests, curt declarations, and otherwise desperate pleas to consider how their actions affect me, does the sheer fact that they somehow are considered supportive by people who are profoundly supportive to me obligate me to consider them support by proxy and keep trying?

I don't have the answers....OBVIOUSLY. The answers, if there are any will probably continue to change, as I grow and change and as other people change. I'm still trying to define what "normal" and "healthy" and "sick" and "balance" and "work" and "play" are all respectively going to look like, in my life, generally, as a twenty-something in a turbulent, unpredictable world, and specifically, as a twenty-something with a disease that's turbulent and unpredictable in its own right. I'm just doing the best I can, for now, and I think that's really all that can be fairly asked.