“I have learned a lot from living life with Moebius syndrome, but the most important is to love yourself and to know that you are the way that you’re meant to be and you are perfect and worthy the way you are. Never let anyone tell you differently.”
My name is Kelsey, and I am a 25 year-old student at the University of Calgary. I was born with Moebius syndrome, a rare neurological condition that causes facial paralysis and speech issues, among many other things.
My physical differences have really taken a toll on my mental health. When people stare at me or make comments, it can make me question my self-worth and can bring down my self esteem.
I distinctly remember one such incident that happened to me. It was April of 2014 and I was walking into a shopping mall. When I walked in the doors, a guy probably around my age came up to me, and what he asked is still clear in my mind. He looked at me quizzically and asked, “is there something wrong with you?”
Totally taken aback, I responded with a meek, “Um, no?”
He continued with, “Why do you look like that?”
I had no idea what to say. What can you say in a situation such as this? To this day, I don’t know why he asked, but if he was trying to make me feel demoralized, he certainly succeeded.
This isn’t the first awkward encounter that I’ve had, and I am sure that it won’t be the last, but it definitely has stuck with me.
Whether it is someone not understanding what I am saying or someone staring at me, these situations can definitely have an effect on mental health, causing me to feel anxious and depressed.
Learning to accept myself the way that I am and knowing that what others think of me doesn’t matter is how I manage to stay mentally healthy. When I was younger, if someone made a rude comment to me or stared, the situation would replay over and over in my head for days.
It has not been easy road, but my self-acceptance has improved drastically. Yes, I may look and sound different but I am just trying to live my life like everyone else. I have learned to let most of the negative encounters go. Some situations still stand out to me, like the incident at the mall, but when I start thinking about these hurtful words, I ask myself why it matters what some stranger thinks of me, and I have learned that it doesn’t.
Throughout my journey, finding a solid support system has been hugely impactful. I have been able to find a group of people that will stand behind me no matter what, and that will never stop listening. My support system includes my family, friends, peers and my Moebius “family.” I don’t know what I would do without these people in my life.
I believe that mental health is just as important as physical health, but unfortunately a lot of people are not comfortable talking about it. It is so important to break down these barriers and break the stigma surrounding mental health. My advice: If you ever need help, never be afraid to ask for it.
I have learned a lot from living life with Moebius syndrome, but the most important is to love yourself and to know that you are the way that you’re meant to be and you are perfect and worthy the way you are. Never let anyone tell you differently.
With my newfound love for myself and my incredible support system, I have done things over the past few years that I would have never imagined possible. I graduated with a diploma in journalism, I lead a Moebius awareness day within my school, I was profiled on multiple local news stations, and now I am working towards my degree.
I know from personal experience that life can be really difficult at times, but it always gets better. Have goals and dreams and never stop chasing them.