Friday, September 05, 2014


As I was indulging in my previously confessed Facebook addiction, I scrolled across an article entitled something like "Coming out as Fat".  It's a provocative title, it's clearly click bait, but it looked kinda interesting, so I took the bait and clicked.

It was mostly an article about how fat people are stigmatized, how there are websites devoted exclusively to fat-shaming (think "People of Walmart") and how this world is difficult for somebody who struggles with his or her size.

I don't doubt it.  There are lots of stigmas attached in this world to lots of different things, and I feel for anybody who has had to change a daily routine or can't participate in things because of his or her weight.

But the whole article made me think about stigmas in general, and since I was thinking about this while on Facebook, I was also checking back to my own feed to see how many times my video has been shared. 15 times, and one time by a friend of a friend who is a complete stranger to me--which seems ridiculous and cool all at the same time.   Seriously, the whole thing made me want to simultaneously do a dance in the middle of my street and also crawl into a hole and never talk to anybody again.

So I'm thinking about fat people, thinking about PKD, thinking about uncomfortable social situations, wondering why making a public video about my disease makes me feel a little silly, and then it becomes clear.

I'm worried about being stigmatized as a sick person.

The world is a fickle place, and attitudes about illnesses do change. Just ask Magic Johnson how it felt to be HIV positive in the early 90's.  Yet I just read a People magazine article about Magic Johnson's gay son and how he can rock a Birken bag.  No mention of the former basketball player's battle with HIV at all.   Is it because it's no longer a mystery how AIDS is transmitted and so it's not an epidemic anymore, or is the world just more interested that Magic Johnson's son would rather play with a purse than a basketball?

But there is an uncomfortableness about sickness.  Does the sick person want to talk about the disease?  Should we ask about it? Is it too hard to process?  Is it too embarrassing to discuss?   Also, people are constantly apologizing to me for being ignorant about PKD, like if they knew more, they would be more comfortable talking about it.  I get that, and I appreciate the sensitivity, but it's not like I was born knowing about PKD.  I had never heard of it myself until the tech who did my initial MRI told me she thought I had it.  I immediately thought, "I've never heard of that, so I can't possibly have that."

If you're not a medical professional, or don't work in the medical field, I have no expectation that you would know anything about my illness, and I also don't mind explaining or educating people about it one on one.  (I DO mind when it's a doctor, and I DO expect doctors to know at least a smidgen about this disease.  I joke about being an educational opportunity for every doctor I meet, but it would be nice I didn't blow every medical professional's mind every time I walked through their door.)  But putting myself out there, branding myself as a sick person?  That feels different.

Anyway, that's a long way of saying that activism for PKD doesn't come naturally for me.  It's weird, I know, but that's the truth.  I am much more comfortable dumping ice on my head for ALS, or educating people about the benefits of therapeutic horseback riding for autistic children, or discussing how hippo therapy could help an anxiety ridden 10 year old with a stutter.  I have spent most of my adult life learning about, caring for, and trying to help those who are struggling with some kind of illness or disability.  Yet when I find myself somewhat in the same camp, I'm uncomfortable advocating for myself.

That's weird.  I know.  Sorry.  I'm sure if or when my children develop PKD, I'll feel completely differently.  For now, enjoy the catchy tune on my video (Glenn Miller's "In the Mood", one of my favorites!), definitely check that box on your driver's license to become an organ donor, consider being a live donor  or participating in a live donor exchange (although that's a much more intense thing, so I understand any reluctance to do so, but it is also that much more helpful, because cadaver organs don't last as long as live donor organs do), and think about how clicking on People of Walmart is, at best, a little voyeuristic, and, at worst, just plain gross.


Heather said...

Hi Heather! I'm Heather and I was just wondering if you could answer my question about your blog! My email is Lifesabanquet1(at)gmail(dot)com :-)

escortbayan said...
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Maniapal-International said...
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Charlotte R said...

I'm 23 and have known about my PKD for 6ish years now. I've been feeling very down about the future with my growing kidneys and chronic pain due to some recent kidney problems. I've been searching the internet today for some hope and inspiration, and your blog helped cheer me up. Thanks for sharing about your life!

Heather O. said...

Hi Charlotte,

I'm glad you found me! There's not much out there for PKD folks, so I'm happy you made it here :).