My Journey to Love My Chronically Ill Body

by Leah Leilani | May 22, 2018

Everyone suffers from insecurity every once in a while. It doesn’t matter whether you’re a man or a woman, a child or a teenager. Nor if you’re disabled or able-bodied. But when your body starts to fail you, that can sometimes escalate those occasional feelings of self-consciousness.

Before the onset of my disease, I was a very active child. I loved running and playing sports. I also belonged to a Polynesian dance group. At 7, my body was very toned and muscular. As my symptoms of muscular dystrophy became more visible, my body was forced to adjust to a new lifestyle involving very limited physical activity. As a result, I started to look like I had put on some weight, and my round face looked like it had inflated like a balloon. As a young teen, I suddenly became hyperaware of my body.

I gained many new friends after transferring to a different school in fourth grade. It was only a coincidence that most of them were quite thin and underweight. We would talk about how much each of us weighed. But I never revealed that I was 10 pounds heavier than they were. Their thighs were like sticks compared to my thunder thighs. I never seemed to be comfortable in my skin. Before I knew it, I was the only one whose body was visibly changing due to puberty. This made me very insecure. I’ve never had a problem with eating disorders, but I started to ever so slightly watch my portions whenever I ate. Soon, my weight plateaued and my doctors worried that I wasn’t putting on the necessary weight to grow.

Little did I know, middle school would hold some of the best years of my life. But along with those great memories would come many health complications thanks to muscular dystrophy. As I found new friends and lost touch with others, my disease progressed further. In sixth grade, I experienced several bouts of the flu, which put me in the hospital and left me looking sickly thin. It took me close to a year to put back on the weight I had lost.

In the meantime, I was maturing and began to experiment with makeup. My mom had bought me some mascara and gave me some concealer for the bags that will forever be under my eyes. My new makeup routine had me rushing to get ready for school. I had to look in every window to make sure nothing had streaked or flaked. It left me unusually grumpy compared to my always bright and sunny personality. I didn’t like whom I was becoming. One day, I noticed how tired I had been and wondered what the cause could be. I realized that my mascara made my eyelids too heavy. Never again would I be able to wear mascara. In a way, it was a blessing because it forced me to love myself without the mask of makeup. It made me feel good to think that I wasn’t like all the other girls.

Once I entered high school, I decided I needed a change. I got my hair cut off. It’s amazing how something as simple as a haircut can be such a big part of a person’s individuality. It sounds weird, but my pixie cut has really helped me find myself. It’s made me less afraid to take chances and experiment with my style. These days, you can find me wearing a dark purple lipstick or a teal fedora hat.

Now that I’m in my 20s, I know that life is more than trying to be a size two. It’s about trying to be the best person you can be. It’s about making mistakes and learning lessons. It’s about loving and being loved. I’ve been through a lot in my life because of my illness, but those struggles have made me who I am today: a person I’m proud of and whom I’ve fought to be. I still have my good and bad days when it comes to loving myself. I don’t think confidence is something that you get overnight and that stays forever — it has to be maintained and worked on. But I know now that there is no “one type” of beauty. As cliché as it sounds, we’re all beautiful in our own way.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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About the Author

Leah Leilani Leah is a Southern California-based patient writer. She’s been an active member of the muscular dystrophy community since her regional ambassadorship with the MDA beginning at the age of 10 after her diagnosis of a rare neuromuscular disease, mitochondrial myopathy (Mito). Leah advocates for those with disabilities and promotes an understanding of her condition by evoking a positive outlook upon the obstacles she faces. Leah’s work doesn’t just stop at her column: she also doubles as a co-moderator on the MD News Forums. Away from her jobs, Leah is known among family and friends for her artistic creativity and outgoing personality.

Comments

julio C Ruiz Gallardo

you are a sample of greatness,i´m a father of a DMD 7 years old boy, he is a very intelligent and happy kid, every body in our family love him, his brother is a 11 years old boy.
I know what is a problem of this ungrateful disease, but we have to keep hope because there is a many peoples in a world working to eliminate it.
Hope, its all we need and thrust in all thous persons who works every days to find a cure.

Best Regard, Julio C Ruiz.

Leah Leilani

Thank you for commenting on my article Julio. I wish your son and your family the best.

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