Why My New Year's Resolution Will Help Others With Stiff Person Syndrome

For my New Year’s resolution, I am resolving to finish my senior collegiate research project on the journeys that patients with my rare disease, stiff person syndrome (SPS), go through to get their diagnosis. This comprehensive exploration of the diagnostic and treatment process from a psychosocial perspective has the ability to not only serve as a chance to further educate myself, but also to help my health and the health of other rare zebras that are faced with my condition. It is my goal to make this project as comprehensive and thorough as possible. I’ll present the project as many times as people will invite me to speak, because the only way to raise awareness about SPS, is by educating others.

In my research, I’ve found it takes the average SPS patient seven years to be diagnosed. Many are given misdiagnoses of psychogenic movement disorders, anxiety, phobia, and functional movement disorders to name a few. The stigma behind diagnoses such as these can have physical, psychological, and sociological ramifications. The diagnosis journey can be very damaging to a person’s morale.

I know this because I’ve been there. I’ve been told it’s “all in my head.” I’ve been told I have conversion disorder or a functional neurological disorder. I’ve been told it’s just stress or anxiety. I’ve been told it’s “all a game.”

This resolution, inspired by two of my college professors, has further inspired me to collect the experiences of other people with stiff person syndrome to identify the flaws in obtaining a diagnosis.

This project will be more than just a letter grade on my college transcript. I truly believe and hope that having all this information in a single article will alleviate some of the delays in diagnosis that for some, can prove nearly fatal. This resolution’s impacts are even bigger than myself.
I’ve gotten my diagnosis. I’ve done my research and schooling. Now I need to make this vision a reality to help others in 2018.

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Getty Images photo via NiseriN