What It Felt Like to Lose My 'Pre-Diagnosis' Self

On September 11, 2013, I met my mast cell physician, who after 15 years of searching, diagnosed me with my mast cell disease. With my entire life starting to make sense, and a doctor who gave me her time, her wisdom and support in front of me, I burst into tears hugging her. Rare disease patients fight for their diagnosis; they fight to have everything “make sense” and hoe that there will be a clear treatment protocol. Unfortunately, after the years of searching, the victory parade of learning what is “wrong” with you is not always met with music and balloons, but instead you are faced with losing your pre-diagnosis self. In that first meeting, we spoke at length about the changes I needed to make that went beyond medications, (for me, medications only can do so much, if anything at all). I had to make life-altering changes to regain control of my mast cells.

I remember my drive home from that appointment, my head spinning as I tried to make sense of the two hours I had just spent in my new doctor’s office. I was so happy to have answers, but also both scared and sad about what this now meant for my future, since I realized rare diseases don’t come with quick or easy treatments. The unknown and the unpredictability of my disease weighed heavily, and I knew in that moment that my life would never look the same again.

Gone were the days of spontaneous adventures, live music, big parties, and travel. Suddenly, my pre-diagnosed life left me and my husband to reimagine our future together. In the big ways, this meant a move to the suburbs, transitioning my work to be from home, and finding drivable locations to vacation. In small ways, it defines our day-to-day life entirely even still today, what foods are allowed in our house, what soaps and cleaners we use, what fabrics I can wear — and the list goes on and on.

While today my post-diagnosis life now feels “normal,” it was not without hours of tears, frustration and grieving my old self, my pre-diagnosed self who at the time could dream freely, live freely and not have to daily weigh the risk of everything I do, whom I can see, and what foods I can put in my mouth. I have learned to appreciate the simple moments I once took for granted: trips to the grocery store, being able to visit a friend, or take a walk with my family. I learned that the details of where I live or work, or what I eat are not what matters in this world; what matters is the people in my life, and the time and celebrations I share with them. What matters is all the joy I feel being alive with them.

Daily I continue to think how COVID-19 feels like the entire world was diagnosed with a rare disease, and we are all going through the post-diagnosis process. We are dealing with the grief, isolation, and anxiety as we all try to pick ourselves back up to find a way to live again within the confines of this new disease. Everything we are able to regain or find a way to do feels like a victory. Just like I have learned in my own rare disease journey, yes so much has been lost, but in losing it I have learned what matters most in the world. That is what I fight for. And right now, it is what the world is fighting for too — the feeling of being alive together again one day.