I attended the 2017 CRN Family Conference in Utah this July.

As someone living with rare disease who is older, (I am in my early 30’s with a disease which just a short time ago, did not let individuals reach adulthood). I find that community, who I relate to, has become increasingly important. I had not realized how important rare disease family interaction is for all members, until I recognized the negative feelings I had hidden about my own self worth.

I am a writer, a speaker, a philosopher, and a poet.

These are things I started practicing as young as age twelve because my soul gravitated to them. As a younger college student, the standard direction for a young woman was transferring these talents towards becoming an educator.

Because a teacher’s schedule consists of getting to school earlier than the students and often staying later in the afternoon, I wondered if I could handle this physically. I already struggled attending school with the shorter and more flexible hours of a student, because of the complications of living with a rare disease.

After graduation, life seemed at a standstill as I only took volunteer tutoring opportunities. I published two books during this time, but increasingly began to feel I had no purpose in living as most adults my age were making money at jobs, and pursuing active careers.

Then I went to Utah July 13-16. I spoke, along with a group of rare disease peers about our visions for the future, about our passions, about who we are. I sat down. A lady approached me with her card and said, “You are the most eloquent young woman I have ever heard speak, what college have you attended?” I wanted to burst out laughing for I had graduated from an unaccredited Bible college and possessed a degree that had no earthly value. Then I wanted to cry because for the last seven years post graduation I had felt like I was nothing in regard to anyone doing anything worthwhile in this world.

I got my spirit renewed at that conference. I started climbing out of the box that told me I was nothing because my skills and talents weren’t making x number of dollars an hour, that box that had told me I could only be what the piece of paper I held in my hand told me, that box that told me because my body held me back, no one would pay attention to the skills and talents I possessed.

The rare disease community truly needs a bigger voice and a greater capacity to include more than just newly diagnosed children.

As a group advocating for inclusivity, we must include parents, siblings, older adults, friends, and loved ones.

Let’s renew the spirits that dwell among the rare. You all are worthy.

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