On Awareness & Vulnerability

the FB picture I posted, with the NMSS frame

It's MS Awareness Week and I decided on a whim this year to put something up about it on Facebook because of it being my 10-year MS-anniversary this year. For the most part, I've avoided posting anything much about MS on any social media. I've avoided it for a few reasons. One, I'm a pretty private person. Two, I do the thing so many of us do and curate what I want to share. I share the good (pretty places I've been, cool things I'm doing professionally, etc.) and occasionally might share a link to something interesting/funny/inspiring on the web.

The image I want to present to the world is Kayla-swimming-with-dolphins and Kayla-teaching-in-Brazil and Kayla-looks-fabulous-or-adorably-ridiculous and not so much Kayla-peed-her-pants or Kayla-fell-down-again or Kayla-is-depressed-and-scared-and-worried or Kayla-doesn't-have-the-energy-to-shower-much-less-get-dressed-or-put-on-makeup-today. In a lot of ways, this isn't limited to FB-land. I'm not always all that open about my experiences with this stuff even with those close to me IRL. In part, it's because I don't want to be seen like that. I want to be the same old Kayla they know, not this sick person. I don't want to be pitied. I don't want to be a drag, a downer.

But MS is part of my life every single day. Even on the days when I can easily pass as a healthy person, I'm not. Every single day, I'm in pain. Every single day, I deal with overwhelming fatigue, brain fog, and a slew of relatively minor things like wonky balance and weird sensations. Those are the good days. There are also bad days, and weeks. And there is also all the annoying business of being chronically ill. Dealing with doctors and insurance companies and pharmacies and all of the related hassles. Stressing about how I'm going to pay that medical bill or whether my insurance company will approve this medication or anxiously waiting for that test result. I don't have the luxury of ever not thinking about this disease, so I enjoy the few spaces where I'm not sick-Kayla and where I'm just Kayla.

But, of course, the reality is that I'm both people. I'm the Kayla that does some cool things and I'm the Kayla that can't do cool things. I contain multitudes, as do we all. And the sick Kayla informs the rest of me. Part of why I jump at certain opportunities to go places and do things is because a big part of me worries or knows or believes that one day I won't be able to do those things.

I'm also sometimes cynical about the very concept of awareness and advocacy. Does it really make a difference? Despite this cynicism, I do believe that awareness is important. I know that I wish I had known something about this disease before I got it. And I know that I've been glad to learn about other people's health conditions (and just life experiences, in general, especially the hard things), as a way to understand them better and just a way to try to see the world from a perspective other than my own.

And for the people that know me or want to, the people that care, I know that I sometimes do them a disservice by letting them only see part of me. And I do myself a disservice as well. Yet, I still really struggle with this. I still want to be the Kayla unencumbered by the health crap and that's how I want to be seen.

Back to my FB post...I mentioned my blog and said that while I wouldn't just share the link publicly, I would share it with people who asked. I regretted doing this almost immediately, even before anyone said they wanted the link. It was scary. My nearest and dearest already know about and read the blog, but the idea of other people who know me (or knew me once and now know me only through that carefully curated social media presentation) was somewhat unsettling. I get pretty vulnerable on here sometimes and I'm not someone who is easily vulnerable in front of others. But despite my fears, I left it up, and people asked.

So...welcome, new readers!  If you want to dive in and read about my particular experience with the disease, check out some nitty gritty and occasionally embarrassing/TMI details in my symptoms series. I've technically been writing on here for 7 years, so there are over 200 posts. Some are mostly just pictures of sunsets, but there is plenty of detail about the things MS makes me think about as well. MS can be very lonely, and writing about it here sometimes helps alleviate the feeling. Comments don't hurt either ;-)