I have always joked that my middle name “Hope” was indicative of the very virtue I would need most throughout my life. After a traumatic labor lasting 3 days, along with forceps and suction, I have been fighting ever since. By the age of three, I had pneumonia a total of 8 times. The spring of sixth grade brought a set of new challenges including boys, bras, and a strange rash that would cover my legs at recess. Countless specialists kept my mom and me searching for answers for 5 years. By my sophomore year, I was rashing all over my body due to the following triggers: emotions, eating, sun, heat, cold, pain, and basically existing. I also was effectively sleeping through the majority of my school day. My quality of life was rapidly declining.
As my hometown ran out of ideas, my mom and I set off for the great state of Minnesota, the home of Mayo Clinic. There I saw twelve different specialties and was subjected to countless tests and exploratory procedures. After 18 months of searching, I developed joint pain which confirmed my diagnosis of Lupus. I had also been diagnosed with Narcolepsy, Cataplexy and other “accessory diseases’.
I needed to figure out how to sort through all that had been laid out in front of me. Then, sitting in a waiting room for a doctor’s appointment, I caught a glimpse of what I was searching for when I met a girl dealing with many of the things I was going through. She understood things people that knew me for years did not, all in a 15-minute conversation. We had a ‘different normal’ than our peers even though we had two very different chronic illnesses. I caught another glimpse participating in the Narcolepsy Network’s Youth Ambassador program. Ten girls my age sat around a conference table for hours and made jokes that no one else could understand. We discussed our frustrations and fears. We understood each other’s limitations
I felt empowered by these moments and as I went into college I decided to try to normalize my conditions and make them part of the conversation. My freshman year was rough and there were times where I was so sick I couldn’t walk or talk. Chemo for my lupus made me puke three times a day, steroids made me gain 60 pounds, and narcolepsy made me fall asleep in the middle of sorority meeting. However, the magic began to happen when I answered questions before they were asked and openly discussed my symptoms. Teachers were more understanding and students began to anticipate how they could help me when I was struggling.
My college experience was dramatically different than my high school experience. Learning became easier and I became more comfortable in my own skin. I felt less like a burden in the classroom as teachers understood my circumstances and peers shared things that impacted them as well. Socially, I transformed into someone with many fierce friends who understood me.
I believe if we open the conversation and provide support the positive effects will be endless. I have created The Co-Immunity Foundation™ building on my personal experiences. My hope is to foster a new culture surrounding those with invisible and chronic conditions and help others live full and vibrant lives while co-existing with sometimes shitty circumstances.