How I Learned to Love Myself While Living with a Rare Disorder

“Cyclops.” “One-eyed monster.” “Hunchback of Notre Dame!”

These are a few names I would hear throughout my school-age years. Kids can be mean, but being a kid myself at the time, I didn’t understand. I played it tough. I pretended it didn’t bother me. I was strong. Those were just words, but you know what? Words hurt. I’d cry in secret when nobody was watching. I wouldn’t tell my friends or family what I was going through and how it affected me. I had to be strong for them. I knew if I told my family, they would struggle too. So, I kept it to myself. I kept it to myself for many years.

I was diagnosed with neurofibromatosis type 1 (NF1) when I was 2, and I am now 31 years old. There was a tumor in my optic nerve which led to the loss of my right eye. Neurofibromatosis causes bumps (fibromas) all over the body and can cause deformity. For me, it did both. I have many bumps and a deformity in my face. Hormones made it worse. After puberty, my symptoms worsened, and so did the teasing and the stares. As an adult, I realized adults won’t call you names, but they still stare. I guess after all these years you get used it. People don’t think you notice when they’re staring at you, but believe me, you notice.

Childhood was difficult. Middle school and high school are not easy as it is, but it was twice as hard for me. For those who struggle with any type of disorder you understand what I’m talking about. Elementary school through high school had its ups and downs. What got me through was
the love my friends and family showed me. They didn’t know it, but they were my rock.

When I graduated college and started a job I absolutely loved, things seemed to be going OK. By this point in my life, I hadn’t been in a “real” relationship, just little flings here or there — nothing serious. I convinced myself it was because of my NF. I wasn’t pretty enough, and no one really wanted to get involved with someone like me. It wasn’t that I was OK with it, I had just finally accepted it. To say it was easy would be a lie. It felt awful, but to me it was no longer a possibility for me to meet someone who could see past my NF, so it became less important.

Then, in my mid 20’s I had a breakdown about having NF.

I finally opened up to my family about it. I told them everything. It felt good opening up to them and not having to pretend anymore. I finally decided that my feelings were more important than protecting theirs, and for once I did something just for myself. You know what? I suddenly felt stronger. Don’t ever feel like you can’t share what you’re feeling for the sake of protecting others. You’re allowed to be selfish sometimes. That’s what I learned from that experience.

For the first time in my life, I felt really good. I finally felt like I had NF — it no longer had me. I fell in love. I fell in love with health and fitness. It took a long time and I’m still working on it,  but I finally started to like my body even with those damn bumps and all. I didn’t feel like I had to cover up anymore. I felt more in control of my body and started to treat it right by eating healthier and going to the gym. The gym was a place where I felt like I could release all the anger, frustration, and stress I carry. It was my happy place.

When I least expected, I fell in love again — not with the gym — but with my boyfriend. I had finally met someone who saw past my NF. He saw me. For months my NF never came up, which at first I thought was strange, but I went along until I was ready to discuss it. He was wonderful. I had a supportive family, I met someone who really took the time to get to know the real me, and I had my happy place.

Suddenly, my happy place was taken away from me. After many years of attending the same gym I was pulled into an office and was questioned about my NF. “What was it? Was it contagious? Could I get a doctor’s note?” I was told other members were complaining about me. I was told I had to prove it wasn’t contagious or else I had to stop going to the gym. According to them I was “misusing” the gym. I couldn’t believe this was happening. It felt unreal. It happened again. Neurofibromatosis won. It took something else away from me. I was hurt, defeated. But, right away my support system kicked in. My boyfriend, my family, and my friends stood by me. I realized then NF didn’t win. We did.

I know these moments of feeling defeat will never go away. I will always have the “I hate NF moments” and my condition will sometimes get in the way of something I want to do but can’t. NF has and will always be a challenge in my life, but it has taught me that when you can’t change the circumstances you are in, you have to learn to change your attitude towards them. It’s not easy, but my one pieces of advice to those who struggle with anything in life is to talk about it. Once you start talking about it, then you’re the one who’s in control.

Remember, you might have a chronic or rare condition, but your condition does not have you.

Cristina Kline, the author, was born and raised in Las Vegas where she is a union representative and data organizer  for a local union.