An Open Letter to Society on What it's Like to Live With an Invisible Illness

January 16, 2019

Dear Society,


When you see me do you see just a girl?  Do you see the pain behind my glasses? That pain has been alive just as long as I have, because I was born with an invisible illness called  Familial Dysautonomia, also known as FD.

 

 

FD is a genetic disorder, commonly found among the Jewish population. In individuals with FD, a progressive neurogenetic disorder, the autonomic and sensory nervous systems malfunctions. Symptoms vary, and may include insensitivity to pain, unstable blood pressure and body temperature, frequent pneumonia, and poor growth.
 

FD may present itself as an obstacle in my life but I make sure I don’t let it stand in my way. I am not defined by my illness. I use one of my favorite hobbies - singing - as an outlet to release my emotions, and I will never stop singing!


These days people struggle so much with self-identity, but when I look in the mirror and reflect, I realize how lucky I am to have been given both this blessing and this curse. Having FD has never been easy but it makes me...me.
 

I never would want to change a thing.

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