In the rare disease community, so much is written about finding people who share your same condition. And while that is indeed valuable, one of the most impactful parts of my MedicineX experience last weekend was how similar experiences are across varying conditions.
That’s not necessarily a positive thing – the undercurrents of frustration, pain both physical and emotional and the strain of chronic illness was palpable in the discussions among ePatients. But what was also overpowering, in a wonderful way, was the strength of an informed, committed and driven health care consumer. I was in awe of my fellow attendees.
There comes a lot of “responsibility” when one is a smart and (relatively) accomplished person with a medical condition. To be an example (of what?), to educate, to inform, to advocate. Depending on my mood I am sometimes all about this and sometimes worn out by it. Approaching MedX, I was a bit fatigued by everything. I was questioning why I was involved in things, if it really mattered. But MedX and the discussions I had and speakers I saw reframed my thoughts.
So… what are my takeaways from MedX? In brief: to be informed, to be engaged, to be persistent. It’s that I have a responsibility as an ePatient to myself, to the Moebius community, and to the ePatient community to push the discussion about care, physician/patient relationships and healthcare as a person with a chronic condition forward.
Moreso, it’s that this conversation is interesting and engaging. That while a string of bad genetic luck might have landed me in this situation and with these experiences, it also means that I sometimes get incredible opportunities from it. And that I should embrace them.
I ended up in San Francisco yesterday for the first night of the American Library Association Annual Conference, listening to everyone buzzing about the SCOTUS decision and their plans for the weekend. I think the concept of pride as a movement is amazing, and a reminder to channel my own disability pride. I mean, I’m active – sometimes too active! – in the Moebius syndrome and Canine Companions community, but does that mean I actually have pride? Do I wear it proudly like a huge splashy rainbow? I don’t know. Sometimes I think I don’t, then sometimes I think I shouldn’t have to then sometimes I think I am failing everyone (lord knows who ‘everyone’ is!) for not being prideful or active enough. That is the paradox of being from a minority group that is diverse and doesn’t have the cultural cohesiveness of other minority groups. I go days without encountering someone with a (visible) disability, months or years without encountering someone with my rare condition. I get complacent. I sometimes, honestly, don’t care anymore. Then I see something – the Hearing Dog graduation I watched on my phone before the opening session yesterday, a new family discovering the online Moebius syndrome community, and am reminded that I do actually have a lot of pride. The rare disorder community and the service dog community are pretty darn incredible. I need to step back, and to have more pride in these groups… and in myself.
“The diagnosis difference cuts another way, too. This study provides evidence that many people with serious health concerns take their health decisions seriously – and are seriously social about gathering and sharing information, both online and offline … Internet users living with chronic conditions stand out from their peers in noteworthy ways: sharing questions online and reading or watching other people’s health stories online.”
– Pew Research Center, November 2013, “The Diagnosis Difference”
I came of age as the internet came of age. I can track my adolescence, and my sometimes-rocky relationship with having multiple chronic conditions, by how I accessed my rare disease community.
It started out in the mid to late ’90s… on rudimentary web forums that were impossible to navigate. There, discussions were heated and difficult to read but sometimes productive. People were just “meeting”, for the first time, people like them. We all learned. We learned what indeed was socially-acceptable in these new, volatile spaces. We learned to take some things at face value, and others to heart. We learned what this new sense of community was about.
Then came the better forums, easier to navigate yet also more perilous. Looking back, in my college-aged naivete, I said things I should not have. I revealed too much. But maybe, perhaps, it needed to be said. People found their voices and a sort of community within these electronic spaces–a community that sometimes translates to a real physical community or friendship and sometimes, perhaps oftentimes, does not. I read more, posted less as I grew older and more wary.
We come upon our present technological state, the era of Facebook and blogs and Twitter feeds and who-knows-what-else. I admit, I eat it all up. I read voraciously, I want to be privy to others’ experiences and advice. I post and share, too, but I have hang-ups. I, like everyone else who does or does not have chronic health conditions, am complex. I am not a sum of my genetic errors, but I am indelibly defined by them. I uncontrollably hesitate, though, when I sense that I am being viewed primarily through the lens of my conditions only.
Maybe this is why Moebius syndrome is listed as the third of the four things this blog is about.
Because it is about me. Because, while I am defined in many ways (like it or not) by my chronic conditions, it’s more complex. My story is unique, like everyone else’s. I can’t help but get hung up in the pressing question of “why?” Why will whatever I have to say matter to someone else, who isn’t me? I have definitely not done everything “right” in this whole living with a chronic condition thing (if there ever is a “right” way to live), so please don’t use me as any sort of paradigm or inspiration.
People do, though. Because that is what is available. And I can’t blame them. I get sucked in, too, to the stories websites. I read voraciously… and then am left numb. Because, really, what does one do with that voyeuristic feeling after you navigate away back onto Candy Crush or whatever your mind-numbing game of choice is. That is my fundamental struggle in my life with chronic conditions: what do I do with this reality, with my existence in it?
GLINDA: Can’t I make you understand? You’re having delusions of grandeur… -Wicked
I’ve been reading all these hopeful, inspirational blog posts recently, and just can’t get behind them. Not that my life is a disaster or anything (far from it, really!) But I can’t get behind the whole “I was a (probably) genetic mix-up for a reason”. I don’t know, maybe I’ve just studied too much disability theory for my own good or am just too damn bitter… but it doesn’t sit well with me.
It isn’t my responsibility or duty, as a human being, to make other people better people. It isn’t my responsibility or duty, living my life, to “teach” anyone anything. Hell, with the amount of mistakes I’ve made recently… please don’t use me as a guide for good life planning!
I see the temptation, though, to make sense of the nonsensical. The one in a million (or thereabouts) chance that whatever happened happened doesn’t make sense. And, for me at least, it doesn’t have to. Unlike some, I can’t wait for researchers to hopefully figure out more about the causes of Moebius syndrome. Why? Because I like to know stuff! And maybe because I approach having been born with Moebius as a purely genetic, random occurrence… rather than anything with any more deeper meaning whatsoever.
What does this all actually mean, though? (and how in the world does it relate to the title of this post?). Well, for me I think the delusions of grandeur can cloud how people interact with the world, and how they expect people to interact with them.
Personally, I feel no sort of responsibility for any kind of social greater good related to the random fact that I was born with Moebius syndrome. For a long time, this wasn’t the case. It ate at me. I thought I should be doing something more, something different, something to help people who for some unknown reason looked to me for answers.
But then I stepped back and realized what I want. And I don’t want that. I am okay living my life to the best of my ability, for me and not to serve as any kind of example. But damn do I feel guilty about that! Which is bad, I know, I need to make myself not as swayed by what I fear people will think.
I hope that didn’t come off as completely bitchy or snobby. But sometimes, preserving a little sanity in this weird, convoluted world of living with a disability isn’t pretty. At all.