Unicorns, Leprechauns, Adults with CF, and other mythical creatures

My pal-from-the-interwebs, Cystic Gal, has recently been involved in a bit of e-correspondence with the CFF regarding their, uh, PR relating to adult CF issues. Or more specifically, the lack thereof. 

Here, she's posted an excerpt of one such exchange, this time about an upcoming webcast presented by the CFF. While I probably would have responded a little bit differently, the basic sentiment - feeling a little ignored and a lot condescended to - I agree with wholeheartedly. I started to leave her a comment, but shockingly enough, it was kind of crazy-long for a comment, so I decided to just blog about it here...

If I wanted to be really snarky, I would point out that while his/her Copy/Paste skills may be remarkable, his/her mastery of the proper use of the apostrophe could use some work (see: "among other doctor's working..." But I'm not a snarky person, so I won't point this out (see? "won't!" that wasn't so hard - WAIT! I did it again!)

In all seriousness, the issue with these sorts of webcasts (in my opinion) is that (at least every one I've watched, I can't speak for them ALL) any time it's an adult/kid care hybrid presentation, it's kidkidkidkid oh,andbytheway, adultdoctorsayingthesamething. 

More to the point, while there are plenty of brochures/webcasts/other info expressly for parents and/or children to the exclusion of adults, there are few-to-no materials focused on adult-specific issues *to the exclusion of pedatric patient issues*. There are a handful that apply to, and are likely geared towards, adults (re: insurance coverage, pamphlet about working as a CF adult written forever ago, etc) but most of the issues covered also apply to parents of CF kids (re: insurance coverage, keeping your job when your child is the insurance black-hole, etc). There are NONE about adult-specific, adult-only issues, of which there are plenty they could choose from (perhaps they could have an intern crawl the internets and message boards for inspiration?).

By extension, the layperson (or even teen/YA patient) going primarily on the info available from the CFF, is led to believe that either:

a)there aren't enough people actually, literally living to adulthood to justify the resources, 

b)there are people who are living into adulthood, but for whatever myriad reasons are socially/physically handicapped to the point that "normal adult rules" don't apply; they're too sick, arrested development cases, or both, and therefore the resources are somewhat unjustifiable, or 

c) life as an adult with CF is somehow magically much easier and more mainstreamed than childhood with the disease (sidebar: I would argue the opposite), and EVERY adult with CF should be a marathon-running brain surgeon with 2.8 kids. Until they get a transplant. And then they should take a few weeks off, get fixed, and go back to brain surgery. 

As bad or worse than the flawed image of CF adulthood presented to the laypublic, is the compounded isolation such a dearth of resources can induce in patients themselves.  When I was about 18, I remember looking at the CFF site, all but expecting to just point-click-find info about, say, "Going to College with CF", or "CF and Gynecology", or "CF and Dating/Marriage."  After all, they had always had great resources about going to school with CF, what to tell your school nurse about CF, puberty and CF...so I was surprised, and a little scared, that the great info I had used growing up seemed to simply drop off now that I'm no longer dotting my "i"s with hearts.

 I didn't cohesively recognize it as such at the time, but it was a feeling of utter aloneness. I'm an only child. The closest thing I have to a big sister is my aunt, 17 years my senior. I was the first in my family going to a 4-year school.  So aside from just figuring out all the "normal" stuff as I go (as I was used to doing, since the whole "only child" bit wasn't new), now I'm supposed to just make up the rules to this CF stuff as I go along? 

WHAT DOES SUCCESSFUL ADULTHOOD WITH CF LOOK LIKE? I would then compare myself to the poster-grownups touted by the CFF at the time...married with kids, surgeons, marathon runners...and feel like a total loser. Until I read that they had their first hospitalization at age 18, or 25, or notatallyet. Then I would just get angry - the only, tiny subset I had been given against which I could compare myself wasn't actually a fair comparison. And feel even more alone. Surely, I thought, there must be SOME adults out there who have survived, gone to college, made a life for themselves, and have actually had their lives impacted in a meaningful way by this disease! The only adult I had known with CF succumbed quickly and suddenly to b. cepacia in his late twenties while waiting for a transplant. I felt like, just statistically, emotions-be-damned, that there HAD to be something between "basically normal" and "dead at 30" - struggling, sure, but making it and happy. 

I didn't find that until after I graduated college, and quite honestly, Piper was the first one who made me realize - YES! It IS out there! You CAN have CF, really deal with CF, and go to law school and live in a fabulous apartment with an adorable puppy and do brunch on Sundays and be unmarried and happy - all with this disease alongside every step of the way, not just a footnote. I don't know if I ever told her this, but I found her blog when I cynically googled "lawyer with cystic fibrosis", expecting to find a few links to Beth Suffian and a bunch of irrelevant junk. I all but lit up when I clicked over to hers and read enough to realize it wasn't simply a phrase in a post somewhere, but that the author herself BOTH had CF AND was a lawyer. Through her blog, I "met" several other people, and eventually discovered CF2Chat.com, a wonderful forum filled with adults living, thriving, struggling, and everything in between with CF (and a few awesome CF parents). They were married! They had kids! They had real, grown-up, benefits-and-a-401k jobs! They were hospitalized all the time! They had all sorts of differing views on everything from treatment regimens to politics! THEY WERE NORMAL ADULTS - who also lived daily with the reality of CF. 

To be clear, I don't begrudge the CFF their contributions to the medical research - it is not an exaggeration to say that without them, and drugs/developments they have directly funded *in my lifetime*, I would be six feet under by now. Also, the support of my local chapter, and the fabulous, overworked and underpaid women who work there, is invaluable, and I have nothing but fabulous things to say about them (particularly the newly-appointed director, whom I won't name here only so that this post doesn't come up in a google search of her). I also realize that the learning curve is incredibly steep and scary for a young family saying "cystic fiwhat?" 

But it's also incredibly scary to just be a young adult, period, these days - nothing is certain, everything is unpredictable, and no one can venture a guess as to the future of our economy, our healthcare, our retirement, our country, our world. But when you add an incredibly unpredictable disease, with very new and developing elements (as CF manifestations themselves often change rather dramatically in adulthood), to the already unpredictable mix of trying to navigate a future as a twenty-something in 2010, sometimes simply being acknowledged, having the non-profit authority on your crazy disease validate that it's not just you, X happens to many adults with CF, or publicly display a list of things and resources to consider when going off to college, starting a new job, starting a family - as much as a resource for CF adults as a supportive, public declaration of the challenges we face - would be an incredibly welcome, much-needed gesture.