Find your voice

In a recent episode of Arthritis at Home, Cheryl Koehn, president of Arthritis Consumer Experts (ACE), and I chat about the one-year anniversary of my blog. We take some time to look back at Joint Journeys over the past year and discuss what it’s meant to me to share my thoughts with a much bigger audience. If you haven’t seen the episode and would like to, please click here to view it.

Ever since the interview, I haven’t been able to shake the feeling that when I chose to share my RA experiences with more than just a few close friends, it felt a lot more like a “coming out” story than anything else. Here’s what I mean…

A few weeks back, I was having tea with a dear friend…OK…I just need to stop here and expand a bit. This friend is quite possibly one of THE most incredible people I know. She continues to amaze and inspire me with her perspectives, her honesty, and her resolve to live her VERY best life no matter the situation…seriously…I have learned so much just by having her as a friend! Oh! And did I mention she also has a chronic illness?!?  So…the other day, when we were chatting, she shared with me that she also (like me) very intentionally waits until the “right moment” in a relationship to share her journey with chronic illness, and she calls it her “coming out story.” 

Her hesitation, like mine a year ago, is we both have done a lot of hard, HARD work to focus and build our identity on all the things we ARE (vs what we aren’t)…like, wife, mother, friend, aunt, creative, imaginative etc. and we intentionally engage in life because we tune in to the fact that we can enjoy the many things we CAN do, like being a mother, gardening, baking, drinking good coffee and let’s not forget mowing down on a giant, warm, sweet, sticky cinnamon bun! Mmmmmmmmm LOL

This work, this defining and even DEFENDING who we are and not allowing ourselves to be restricted or defined by illness, is no small battle. And it isn’t a battle fought once and never more the adversary found. There are days we fight to recenter and realign…regain focus and intention…especially as the battlefield will change without warning. #amirite

We don’t want pity, or to be seen as weak. We don’t want to be kept at a distance because someone might feel “awkward” around us, doesn’t know how to engage or are too uncomfortably curious about our illness…no thanks. Like the rest of humanity, we want acceptance, inclusion, and community. We want to contribute, we want to learn and grow, we certainly want to participate. We want to try new things, make new discoveries, and redefine our limits…more than once!

When we share our story, it is with great hesitation that we make ourselves vulnerable, disclose our imperfections, our inadequacies, and our uncertainties.  We brace ourselves for the reactions, responses and perhaps even the way a relationship might change. 

But here’s what I’ve learned over the past year of writing and sharing…

Initially, when someone would respond to my blog and tell me, “I had no idea you had RA!” I was pretty proud of myself, like I’d won a prize or passed a test or something LOL But! Then I realized, as numerous connections were made with people who took the time to share their own struggles and insecurities, how important it was for me to keep sharing mine. Perhaps my perspectives and thoughts could begin to demystify what others think chronic illness “looks” like, and even more importantly, create new avenues of connection.

I realized I had an opportunity to create common ground and to be a part of inspiring others to live their best lives, no matter their circumstances. I certainly do not have answers to the myriad of questions out there, but what I do know is this…that it is worth the time…wait, let me try that again… YOU are worth the time, effort, and energy, to keep working at being the best version of yourself that you can be. I want everyone to know this. I want them to truly believe they have worth and value and certainly have something to contribute.

One of my very first posts was about community and just how integral community is in our lives. I know for me it’s been a cornerstone, a pillar in my life that certainly takes great weight and holds me up when I haven’t the strength to do so on my own. We truly need each other to make it on this journey and I’m so pleased to have the opportunity to become part of my readers’ community.

Thank you to all of you who have read and interacted with my writing. I am so grateful to have you in my life. Thank you for accepting me for who I am…today…right now…all my shortcomings and imperfections…your acceptance has made a difference.

To those of you who need to hear it, this is for you. Your story, your feelings, your perspectives, your experiences are for sharing, for creating connection and for building community. Be brave. Find your voice.