My disease makes my life feel like I’m on a roller coaster.. up, down, up, down, upside down and cruise, baby. No idea where I am going.. just flowing.
Sometimes I feel like I have to hold my breath because everyone is watching me. Every pair of eyes is almost immediate direct contact on my lower body. My body temperature increases & I start to feel high-anxiety… and I am forced to wear a smile when I feel like hiding from everyone.
The first thing that you should understand is that I have a permanent condition in which I cannot change how I look how or how my body makes me feel.
I have a permanent disability, condition/disease.. however, you want to label it.
My disease is a rare condition called sacral agenesis, which was formed at birth. There are minimal resources to understand how this disease started and if there is a cure to healing the formation of the spine.
I was born with a curve in my spine, missing sacrum and complications with the lower body which have limited my mobility.
I have endured 14 surgeries throughout my entire life but I’ve met friends with the same condition, who have experienced more than 40 surgeries and counting…
My limitations include:
- walking, running or jogging
- lifting things with my body
- bending my knees
- moving my feet
- using the restroom differently
- frequent migraines
- use of crutches to walk
- special attention to health & exercise
My self-esteem took over 20 years to finally become comfortable in my own skin. I would not look directly into mirrors because I was dissatisfied with my appearance. I am constantly battling mind games in my head to accept that I am the who I am. Do you accept yourself, too?
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