Body Image & Disability: My Journey To Self Acceptance

Hi! My name is Amy, I am 48 years old and I live with a rare type of Muscular Dystrophy called Bethlem Myopathy.

It took doctors 44 years to finally diagnose me. Most of my life was spent searching for a diagnosis to explain my labored gait and weak muscles, as well as joint contractures in my ankles. Due to these contractures, I had to have several surgeries, most of them occurring in my childhood years, with a few sprinkled into adulthood. These surgeries left me with many scars all over my feet, ankles and lower calves.

My life has been a journey of ups and downs with my body image. As a young girl, a teen, and into my 30’s I struggled with the appearance of my scars, and insecurity about the way I walk.

My body image in general was the source of a lot of stress and insecurities. I had many types of leg braces over the years to help me with my foot drop, which I have on my right foot, as well as braces to help with ankle contractures and instability.

I didn’t like how my braces looked, and how they wouldn’t fit into any stylish shoes very easily. I felt they were just another reason for people to stare at me.

My awkward gait was already attracting attention everywhere I went, so I really wasn’t interested in giving people more of a reason to stare. Maybe that sounds silly, but unless you have a condition that attracts unwanted, and sometimes cruel stares and comments from others, then maybe you wouldn’t understand. It’s not easy.

Below, I will share how I viewed myself at different ages, and times in my life. Keep reading to find out how I’ve come a long way in learning to accept myself, scars and all!

As an elementary student, I was self-conscious of my braces and my ever-increasing scars. At that time, it wasn’t as much about my actual body, as it was just a feeling of being different from all the other girls.

I was envious of how fast they could run, or how they could jump and just seemingly do everything with ease. They would turn cartwheels like it was the easiest thing in the world. It looked effortless. I wanted strong legs, but my legs had braces, or I was often wearing casts from surgeries. I did what I could though and kept up to a certain degree.

In middle school, I started to become more aware of my body, my size, my scars. I have a 3-inch scar on my left thigh. I hated that scar. It was from a muscle biopsy I had when I was about two years old. Often, people thought I was wearing panty hose and they had a run in them. That was so annoying to me when they would say that. I would always think to myself, why do they think as an 11-year-old, that I am running around in pantyhose?!

After numerous surgeries, I was able to shed my full-time braces, but the tradeoff was that both of my ankles and lower calves are covered on all sides with big scars. The ones that bothered me the most are the two huge scars that are on the back of my calves from Achilles tendon surgeries. I always tried to hide them with socks.

I didn’t want anyone looking at them or asking me questions about why I had them. It all just felt very personal to me, and showing my scars forced a vulnerability that I wasn’t ready to embrace at the time.

In high school, my body image issues only increased. It’s not uncommon for a girl to compare herself to others, and not feel up to par with some of the girls. As a disabled girl, my insecurities were tenfold. I did what I could to “fit in”. I loved keeping up with the trends as much as anyone else, and I found that finding my own sense of fashion was exciting to me. It allowed me to be creative, and express my individuality in a different way.

I enjoyed taking trends and putting my own spin on them.  It bothered me though that I didn’t have perfect looking legs. I became obsessed with my body image, and in my mind it was rough. I found myself constantly comparing myself to others. Those thoughts took up permanent residence in my mind for many years, and let’s be honest, they still visit from time to time.

During my sophomore year of college, I started getting interested in weight training and even took a weight training/health class. Kind of ironic because I can’t really lift much weight due to my muscular dystrophy causing weakness, but it was educational! It sparked my love for exercise, but I went down the wrong road with that, and became obsessed with my food, and went through a phase where my eating was pretty screwed up.

I was trying to keep my weight down. I am on the shorter side at 5’2″, and as someone who can’t burn a ton of calories because I’m not able to move as much, I have to be careful. If I gain weight, it is harder for me to walk. Even a few pounds make a very noticeable difference in the effort it takes to walk.

For a few years after college, I Went through a lot of ups and downs with unhealthy diet habits and restricting myself because I wanted to look a certain way.

In all transparency, I still struggle with body image at times, but I’m working on it, and I’ve come a long way in that area. I still desire to be a healthy weight, but as I get older it is more for health reasons than it is for vanity reasons, or trying to fit in.

Exercise is important to me, but now it’s because I know that is my part in keeping my muscles as healthy as I possibly can, as is what I put in my body.

I accept my scars now as a part of me, and I never think about trying to hide them or cover them up. They tell a part of my story, and I’m proud of myself for making it through all those surgeries and years of rehabilitation. They are a roadmap of the life I have lived.

In talking with some others who have disabilities, I’ve learned that I am not alone in my struggle as a disabled person with body image issues. I am aware that non-disabled people have body image issues too. This is just my perspective.

I would like to be a part in helping to change that mindset. Humbly courageously continuing to work towards a healthier mindset for myself surrounding my body image, while encouraging others to do the same.

I think we should be proud of our differences. I think our differences are what make life interesting. How boring would it be to all look the same, or talk the same? We were never all meant to be the same.

I hope that I have, and continue to, shine a light on my journey to believing in myself, while also highlighting the reality of the challenges I have faced, and continue to face as a person who lives with muscular dystrophy.

We can learn so much from each other if we are willing to share our stories and are willing to listen to each other’s stories. I encourage you to share your story too. When we can open up and share, it allows us to better see too, all that we ARE capable of. 💚

I love being able to go out and share my story with different audiences and share how I have come to a place where I can embrace vulnerability in order to help others.

I strive to be that person for someone else that I once needed in my life. Connecting with others who are feeling alone on their journey is something I love to do.

For more on my story, check out my weekly blog posts on my blog here.

You can also see how I stay active and enjoy challenging myself by following me on Instagram.

Note from Lainie

I absolutely love Amy’s vulnerability and outlook in the post above and I’m pretty sure it will resonate with many of you as well. many of you can relate. Please share your thoughts and reactions to Amy’s post using the comment box below.