Conversation Starters

A warm hello! I’d like to introduce myself. My name is Sarah, I’m 42 years old, and I have cystic fibrosis.  I want to reach out to everyone living with chronic health conditions in hopes of starting a conversation, and what's up for me right now is how we cope.  How do you cope with chronic pain or illness, fatigue or sensitivities, and with all that comes with them – all the time needed for treatments, the impact on work and relationships, the ups and downs in health and the emotional ups and downs that tag along, sometimes simply getting through the day? What a rollercoaster! I don’t presume to know what’s best for you personally when you’re trying to face decisions about new medical options or alternative avenues of healing.  I’m here in hopes of giving you a space to notice and understand and hopefully get some ideas for navigating what goes on under the surface, in the part of us that can’t be measured by blood tests or treated with antibiotics. I’m here to invite you into conversation about what helps your life work in the big picture, what the hard parts are and what comes easily for you.  I’m all about creative brainstorming together to discover what stops us short, and share what keeps us going.

I bought a t-shirt recently that says “Shine On.” That pretty much sums it up for me. That’s what I’m yearning to make easier for all of us, to bring our real, brilliant selves to the table no matter what’s going on. To learn how to ask for help even when it’s like pulling teeth. To find the golden thread that can pull us up out of the inevitable moments of doubt or depression and remember what lights us up, what brings us joy, what we most want to share during our time here. To enthusiastically, radiantly shine on as who we truly are.

When I meet other people coping with chronic health issues, I’m always struck by their passion to help here – speaking to groups after transplants, tossing around ideas for what would help kids or families with a new diagnosis, becoming athletes to remind us all what is possible. And all those who blog their frustrations and triumphs in an outpouring of human spirit that really bowls me over. We’re a remarkable bunch, I think.

So, when life with chronic health issues hands you lemons, what flavor is your lemonade? What balances out the bitter and sour and rekindles a sweetness, or zest for life? What keeps that inner part of you alive and creative when your body is struggling? I’m excited to explore some of these different threads in future entries, and invite you to please chime in via comments with the topics that you’d like to bring up in the conversation. And I’d love to hear, what flavor is your lemonade today?