Posts tagged a story
It Couldn’t Be That Bad, Right? On Vulnerability, Invisible Turmoil, and Being a Voice for Others in the Face of Chronic Illness

Vulnerability is hard; in speaking with others, in writing about our experiences, and even more so publishing those musings online for all to see and dissect.

During college, I relished connecting with others and exchanging stories. I was frequently inspired by others’ struggles, dreams, and ambitions. I loved sharing my history and seeing how such different backgrounds could overlap with common hurdles that had been overcome.

Until one spring during my senior year, something went wrong. Parts of me were changing and I didn’t know why. These changes were so profound that I didn’t trust my mind, my emotions, or myself anymore. The person I once was, slowly started slipping away.

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Unexpected Motivation: With Chronic Lyme Disease Wrapped Tightly Around Her Entire World, 16-Year-Old Mikayla Navigates This Daunting Diagnoses With Both Determination and Patience

Let's start here, shall we?

While most kids my age have days full of plans and activities like sports and social gatherings, I have days full of fatigue and headaches and doctors visits. I've been attending public school my whole life, until recently, when my health got to a point where I could not get out of bed. So I had to transfer to school online. 

While I do get some freedom, I also have almost nothing left that resembles a teenage life, which hasn't been easy.

I see people my age living life to their fullest and it pains me to know that some days I can't make it out the door. That's not a possible life for me right now. It's hard to think about the future because it's so unknown. Academically, I have been successful through this time of struggle, which is something I am very thankful for. However, it takes much energy, drains me out for the day, and leaves me with nothing left.

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Rise and Thrive: A Story of Lyme Disease, Dance, the Negative Side of the Word “Heal,” and Why Hannah Has Never Thought of Herself As Broken & Needing to Be Fixed

Sometimes a diagnosis can feel like a death sentence.

Whether your particular sentence is an injury, illness, or mental health condition, it can feel as though the walls are closing in. It’s as if there’s no escape and no way back to the life you once lived. At least this is how I felt when I was diagnosed with not just Lyme disease, but also heavy metal poisoning, mold toxicity, and a garden variety of parasites.

I was 32, with a three-year-old son, assorted jobs, and a life that simply didn’t accommodate chronic illness. I was devastated. I shook with fear, with disbelief, with denial. Now I refer to myself as the luckiest Lyme patient alive...

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Chronic Illness Reimagined as Something Glamorous: Through Color, Love + the Stories that Go Unheard, Rora Blue is Creating a Whole New Platform to Share Your Voice From

Why you should get to know Rora Blue 

When we think of sharing, our mind often jumps to the thing that we're most familiar with, whether that be words, video, public speaking - or something terrifying that we'd rather not do. So when we are witness to someone sharing in a way you've never seen before, it can take a moment to catch your breath. To realize the power that we have to create an entire platform that gives a voice to those stories that we'd rather not share.

And to step back and see that we too could take a piece of ourselves and share from that place too.

The uncomfortable, painful, raw, vulnerable, and all too real thoughts. So many times I've written something out then erased it, even if it was only for my eyes. So many times I've gone to say something to someone and backed out at the last minute - as if my heart and mind are both trying to win me over. 

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Endurance: A Lyme Disease Story Founded On Persistence, Determination + the Reminder That You Are Not Alone

I've had chronic neurological Lyme since 2006, and am incredibly lucky to have been mostly in remission for the past three years. When I was first lost in the fog of Lyme, fighting to survive day-to-day, bewildered by the controversy surrounding this illness, I held on to the stories of others as a lifeline. When I finally felt well enough, I made a video about my own experience with Lyme in the hope that I could be that lifeline for someone else. 

Reflecting on what living with Lyme has meant to me, “endurance” is a word that I return to again and again. So many of us have learned to endure far beyond what we thought possible, persisting and surviving and finding strength in small victories.

This video is for anyone struggling to endure another day, a simple reminder that you are not alone.

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Finding + Creating Your Own Best Self While Taking On The Setbacks Of Lyme Disease. A Story By Natalie Bettinelli

I was diagnosed with Lyme disease on July 6th, 2016, just three short weeks after my wedding in Napa, California. In what seemed like no time at all, I went from being surrounded by friends and family and feeling overwhelmingly loved by the outpouring of support, to shocked, scared, lonely, confused, and very, very sick. 

Looking back, I should have seen the signs and known something was up. We had a stressful year, but like anyone, I found excuses for my exhaustion and poor physical health. I blamed work, moving across the country, changing jobs, my long distance relationship, and training for my first marathon. I continued to tell myself to push through, that I would be fine.

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