I’m told that June is “Myasthenia Awareness Month” in a few states that have acknowledged its existence. I have Myasthenia Gravis, so I suppose I should care. The truth is, I’m always a little perplexed about what it means to be aware of an illness. I understand that it’s important for society to accept people with Autism, to get a better handle on their sensory needs. I know what it means when someone says, “I need you to understand what it means for me to be bipolar. Sometimes I can’t help how sad or elated I feel.” I get all that, but so what if the entire United States (let’s not even worry about the rest of the world getting any of this) understands what it means to have Myasthenia Gravis? What does that mean for me and the 20,000, or so, other people in the US suffering from this rare neuromuscular disease?
High school is hard. I think that’s a keynote in every movie from the eighties and onward. It’s hard to find your place within the pale yellow hallways lined with blue lockers. It’s hard to feel as if you belong there; so few people do. Mostly, high school is about faking it. Even the ones that look like they belong probably don’t feel that way.
I, like many people, struggled in high school. I struggled with the feeling of not belonging. I struggled to fit in. I had a lot of friends, but I often felt alone…on the outside looking in.
I had a lot of body issues. I have a chronic pain bone disorder called Multiple Hereditary Exostoses, and my body was marred with scars from surgeries, my limbs were oddly shaped due to the bone growths. I missed tons of school due to bad pain days and surgeries, so much that in every year book at least one person wrote something along the lines of “it was nice getting to know you, when you were here” or referred to me as “crutch girl”.
I experienced a lot of pain, but I desperately fought to hide that pain and those differently shaped limbs…because in high school, you feel as if nobody will understand you for your differences.
Maybe I was dramatic, or maybe I was a typical teenage girl in the sense that I honestly thought I would never get asked out by a boy. I thought for the longest time that a neon sign flashed over my head, boldly and loudly stating that I am different and less than.
I was sixteen when I met my first boyfriend. We were all hanging out downtown, a group of our mutual friends. I’d just run into the bank to withdraw some money and was walking towards the group of people. I was shaking, completely unnerved by the boy staring and me and my legs. I thought he was noting the large tumor off the side of my right hip. I thought he was noticing my limp. So, I snapped at him.
“Take a picture, it will last longer,” I said, narrowing my eyes menacingly. I was used to kids making fun of me. I used to being called Disease Girl, Crutch Girl, or Gimp. I’d developed a sharp tongue and wit that I used to defend myself, to make myself stand taller when I really felt like shrinking away to nothingness.
The boy did a double take and started to laugh. There was something about him that was different though; the way he was staring at me wasn’t like he was observing my differences and judging me. The way he laughed wasn’t as if he was laughing at me.
He flirted with me all day, and that night…he asked me out on MSN. I said yes.
I lost my virginity to him less than three weeks later. I kept as many layers as I could on. I didn’t really talk to him about my disorder, and he didn’t ask. I figured he just accepted it, but less than a month later, he broke up with me over MSN…the same way he’d asked me out.
“You were just another notch in the bed post, and that bone thing is gross.”
When the words appeared on the little MSN chat room, I felt my heart crumble in my chest. It wasn’t so much the pain of being dumped, of being told you were literally just another notch on the bed post…it was the pain of having your biggest insecurity tossed straight at you.
It took a long time for me to recover from that, I spiraled into a deep, thick depression. I told nobody at first, I honestly thought people would think I was completely stupid and pathetic for being so broken over simply “getting dumped”. But it really had nothing to do with the getting dumped part.
I suppose the lesson was a harsh one; do not trust so easily, and do not put so much weight into the opinions of others. Easier said than done, I know. When I was finally able to see the situation with clarity again, a whooping three years later, I understood it more.
Some people are just so ignorant that there is just no fixing that. Some people can’t appreciate beauty in alternative forms. Those people are not worth the tears you shed over them. There is someone out there that can love you right, and it’s you.
Sure, it took me seeing how my now husband looked at me to realize it, but if you look at yourself and see beauty and worth, other people will see it too. Confidence is attractive, the I don’t give a shit what you think because I know my worth attitude is very attractive.
A lot of us struggle with loving ourselves; you don’t need to have a disability to have difficulties seeing your own beauty and worth. We are controlled by the media’s perception of “what is beautiful”, and too often we are our own worst critics.
But we can change that. It’s not an easy thing, but the first step is being up for the challenge…of deciding that I will no longer put myself down, I will no longer take stock in the harsh words of cruel people with crueler intentions.
My Granny always said; if you don’t have anything nice to say…don’t say anything at all. That includes things about yourself. If you don’t treat yourself with kindness and respect, you’re not exactly paving the road for others to.
J.C. Hannigan is a married mother of two in her mid-twenties. J.C. is addicted to coffee, Instagram selfies, Cadbury Mini Eggs, and Dill Pickle chips (only not together, because that would be gross). She has been blogging for nearly 10 years, and won a Bloggie award some time ago. She writes new adult romance novels and currently has two books published, Collide and Consumed. You can find Jess pretty much everywhere; except, it would seem…in the laundry room.
I’m going back to bed.
It has been a very emotional couple months for me due to a very stressful job environment (as of late), a loss of someone close to me to suicide (the very thing I advocate against), and some personal things that have led to my belief that my very world is crashing down on me with no hope of resurfacing. It has been so much so fast and so tough that I made a call to my doctor that I haven’t seen in three years to request a refill on the medication that I haven’t taken in two. Thankfully, the doctor refused to speak to me or see me because I had stopped going to see him. (Not sure what’s thankful about that as far as our mental health system goes, but that’s ten years of rants that I just don’t have the sanity for right now.)