A sample text widget

Etiam pulvinar consectetur dolor sed malesuada. Ut convallis euismod dolor nec pretium. Nunc ut tristique massa.

Nam sodales mi vitae dolor ullamcorper et vulputate enim accumsan. Morbi orci magna, tincidunt vitae molestie nec, molestie at mi. Nulla nulla lorem, suscipit in posuere in, interdum non magna.

Naming Things

It’s been said, and I believe it to be true, that naming things gives you power over them.

A recent post by Sara introduced me to a term I hadn’t heard before, Impostor Syndrome.  Reading about it, it seemed to describe the general unease I feel at times when interacting with those I consider to be “major” players in the DOC.  It even more describes how I feel when interacting with those involved with the Society for Participatory Medicine, I’m not sure I even deserve to be on the same mailing list with the folks of these communities.  Yet both groups have made me feel welcome.

I used to think it was just being insecure about myself and my abilities, my voice.  That insecurity takes another hit when I don’t seem to get invited to some of the “major” diabetes social media events, such at the Roche Social Media Summit which is taking place this week in Indianapolis.

I’ve recently gotten to a point where I really didn’t care if I was there or not.  But the insecurity remained.  Insecurity is such a nebulous word.  But giving that insecurity a name… that let me take a more objective look at that those situations.  What I finally decided is that I don’t care who was there, as long as voices representing the entire community are heard. 

I learned another new term last week.  One that I believe describes my advocacy efforts, and those of so many more, to a tee. It also has the bonus effect of once again naming something I’ve struggling with and have blogged about.  That shame of survival, the survivor’s guilt.

That term is Proactive Survivorship. Trisha Torrey uses that phrase, calling it the 6th Stage of Grief.  Go read that article, I’ll still be rambling on when you come back…

It’s a step that goes beyond the five steps of grief to create something good for others. It allows those who embrace the concept to go beyond the mindset of being a victim, and into the mindset of being a hero to others.

I’m not sure I picture myself as a hero, but so many of the patient advocates out here, no matter the condition, seem to fit that definition so well.

Why do people use their horrible experiences to create something good for others?

Because five steps of grief aren’t enough for them. They need that next step – prevention and improvement – to get past their grief and to add to their own quality of life, post-tragedy.

At then end of the article Torrey describes a few of the benefits of proactive survivorship.  One that struck a chord with me was

Proactive Survivorship becomes a constant backdrop to your entire life, but not in a negative way.

I had always viewed myself in such a negative light.  As failure because I didn’t die like I was supposed to.  A failure because I didn’t get the complications I was supposed to.  The complications that someone who basically ignored his diabetes for 4 decades should have.  I am a statistical anomaly, an outlier on the graphs.  Literally a genetic WTF?

I named that shame I felt and proactive survivorship lets me understand why I blog and advocate.  I do it because I need to repaint that negative backdrop in my life, because I want people to know they don’t have to be alone in their condition, whatever that condition may be.  I do it because I want people to know that you don’t have to do it perfectly everyday, just try your best.  I do it to let people know they can take control of their healthcare, become empowered.

I do it because I have seen so many other advocates out there doing it.  What their reasons for doing it are, I don’t know.  And I’m honestly not sure it matters, the message is getting out and reaching more and more people.  People who need to hear these messages.

I do it because I need to, because I was not comfortable in my own skin and did not like who I was.  The anger, the bitterness, the constant negative thinking… now I have a name for what I’m going to beat those things with.

I’m curious now to see what happens next

© 2012 Scott Strange, Strangely Diabetic and

  • Tim Brand

    Great post! A lot to chew on mentally. I’ve had some of the same feeling, but you seem to organize them so I can look at the picture a little more clearly. Thanks for sharing.

  • Pingback: Like These Links. D Pluribus Unum. «

  • Great post Scott, this is a lot to chew on. It sounds like a pretty powerful strategy, and one I’ll explore in my personal struggles as well. Thank you!

  • Pingback: » A Purpose for Survival Strangely Diabetic()

  • The “best” thing about the impostor syndrome is that you have no idea who is feeling it and when they are feeling it. Or maybe that’s the worst part.