Monday, February 11, 2013

Lupus Courage: Defined by an Email


I'd say I receive about two dozen emails, comments, and questions from various people around the world every single week. Some folks want to talk "lupus", others are interested in the Pillbags, and still others are interested in exploring the world of publishing and/or manufacturing. Many of them want my take on the subjects mentioned above, while others just want to connect with someone who might understand. In either case, I thoroughly enjoy reading and responding to these messages, as they remind me why I blog about life with lupus week after week, why I wrote my book, and why I invented the Pillbags. Every time someone reaches out to chat with me, I'm energized and encouraged to keep at it. And so I do. 

And while I've fielded hundreds of emails over the course of the last four years, there's one thing that continues to blow me away with each note I read: the courage it takes for each person on the other end to hit "Send". It's taken me years to be able to talk about and share my experiences with lupus. Sure, I'm as chatty as they come today. But in the beginning? Oh boy. The subject of "lupus" was strictly off limits. I only wanted to talk about it on my own terms, and the thought of reaching out to someone to ask for help, pose a question, or solicit advice was completely foreign. No way was I willing to put myself out there, admit my naivete, or confess that things weren't A-OK.

No - I thought it best to try and negotiate this crazy, daunting world of life with a chronic illness on my own – certainly not the best decision I've ever made. I was just so worried about what others would think. I didn’t want to appear like a frightened, struggling, broken young lady, even though that’s exactly what I was.

Once I found a support group, of course, I started to open up. But I did so slowly. Cautiously. And with great reluctance. Even two or three years in, I still wasn't comfortable with lupus or myself - and it showed. I continued to struggle physically and emotionally, and my inability to make progress was the result. I kept fighting it, trying to figure out how I could ignore the disease and make it go away. It never did, and I eventually changed strategies. Oh, but what an unnecessarily long journey that was.

So with every note I receive, I literally applaud the efforts of the author. What a wonderful step they’ve taken toward coping with this nasty little disease.  Taking it upon themselves to reach out, connect with another, and search for a better way to deal with lupus is a feat in and of itself.
                                                                                  
And when someone asks after my Pillbags, I think it’s so cool that someone else out there believes it’s possible to still be stylish, despite a medicine-dependency. That as pill takers, we’re not destined for a world of plastic clunkiness and unsightly pill dispensers. We can take our daily meds, and do it with a dose of style.

And I feel equally as inspired by the people who reach out to me about publishing or manufacturing. People reaching out in order to make the world a better place--be it through written word or an invention of their own. There can never be enough ingenuity in the world, and I'm thrilled everytime someone invites me to share in that process.

So keep the emails coming, continue commenting, and keep the ingenious ideas flowing. You motivate me every time my in-box dings!

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