I had the incredible opportunity to have my story featured in !nsp!re Magazine, which is published by BCNF and edited by the incredible Desiree Sher. Feel free to click the link below to go directly to the magazine itself (and see several other super cool stories), or you can read my entry below!
Let it Go
The last thing anyone wants to be is different.
Conformity and social norms are celebrated, and it seems many people alter themselves to seek validation and acceptance from their peers. It breaks my heart that people who try nothing harder than to be themselves are segregated, and labeled as "different".
I always used to be afraid of that... to be the "odd man out". I kept a secret, a might big one that is, for 18 years of my life because of my immense fear of people finding out my life story. The last thing I wanted people to know was how my body grew tumors everywhere, how my bones were deformed, how my hormones didn't work, and how my life had been consumed by severe anorexia and depression. Why was I hiding such an integral part of myself? Because I was afraid people were going to find out I had Neurofibromatosis.
I did everything in my power to keep my life a secret from people.
When I missed school because of a doctors appointment- told my friends that I was out with teh flu! When I went home because my head felt like it was about to explode from the pain- I was going to the dentist! I was able to lead what really was a second life for almost 18 years before I started to lose sight of who I really was. My life was filled with lies and illusions, and I wanted it all to stop.
My name is Courtney Willoughby. I am 22 years old and was diagnosed with Neurofibromatosis when I was three years old. I lived a very normal childhood, and really didn't know I was "different" until I had a plexiform tumor removed from my back when I was 13. That was when my doctors found an inoperable brain tumor that appeared to be taking my hypothalamus and pituitary gland hostage. Subsequently, my diagnoses included scoliosis, hypopituitarism, growth hormone deficiency, chronic daily headaches, an overactive bladder and ribbon rib deformity. Additionally, I had tumors located in my abdomen, pelvis, arms, legs and ear. I was absolutely devastated by these diagnoses. I thought that this meant my life was over. In my mind, I was different, and that terrified me. Who was going to accept me now?
I soon began harbouring all my fears and anxieties regarding my health until those thoughts essentially ate me alive. I was a hermit to my own thoughts. I constantly feared people would find out about my genetic condition, the "thing" that was taking my life over. All I could think about was how unfair my life was. It was unfair that I had to live with this condition. It was unfair that I had seen 36 doctors in only nine years of my life. It was unfair how I had to constantly wake up in pain, and go to bed with the same pain that failed to be soothed by anything. My thoughts took me to some very dark places, places that I never want to revisit.
I spent about three years of my life in that dark place and then one day I was ready to say "No More!" I was tired of being an inauthentic version of myself. I thought it was time to start coming out of my shell.
It was at this point in my life that I had the incredible opportunity to meet Reggie Bibbs. Reggie is the founder pf the Just Ask Foundation, and is a valuable crusader in raising awareness for Neurofibromatosis.
I can remember every detail of our first meeting of the man that would become my hero. Reggie saved me. After meeting Reggie and hearing him speak about overcoming adversity and embracing your uniqueness, I was inspired to make a change. I came home after meeting Reggie, feeling refreshed. It's like someone hit the "restart" button in my brain. I suddenly felt like a different person.
I came clean with family, friends, and loved ones via a Facebook post. It seemed simple to me, and honestly I didn't expect much of a response. I was however, overwhelmed by the number of people responding and commenting on my post, and even sending me private messages with words of encouragement. This is the point in my life where I decided to "Let it Go", as Queen Elsa said in the movie Frozen.
My philosophies on life changed when I realized my priority in life didn't have to be my Neurofibromatosis. I realized that I didn't have to be my diagnosis. Sure, I was a person living with a chronic condition, but that didn't take away any of my worth in this world. I realized people were going to think whatever they wanted about me, and I could try my best to "fit in". Ultimately I realized that I wanted to choose my individuality over conformity.
Let me break something to you gently. You might already know this.
There are seven billion people living in this world. so there is a pretty good chance that a few of those people are going to dislike you. It's as simple as that. So why would you change yourself for those few people, when you could be living a life where you love yourself?!
You are the only you that you get in this world. and you need to love yourself regardless of your flaws and imperfections. You wake up as yourself, and go to bed the same person each day- you can't fight biology. I tried for so long to be a person that I thought everyone else wanted me to be, and ended up completely miserable, isolated and alone. It wasn't until I accepted that I was a worthy individual regardless of my imperfections, that I really began to accept myself for who I was- NF diagnosis and all.
Life is short, I encourage you to be brave. Be courageous. Fight for what you believe in and find your passion in life. We live in a world full of stress and negativity, but no matter how much you worry about the future you cannot change the outcome. Embrace the here and now, and be the most authentic version of yourself. Trust me, you might just like what you find when you leave your insecurities behind.