Why I Identify with Being Chronically Ill, Not Disabled

Leah Leilani avatar

by Leah Leilani |

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Every now and then, when I see my reflection in a window or mirror, I’m surprised. Most of the time, I forget that I need a wheelchair to get around. Even in my dreams at night, I am as active as any able-bodied person. Of course, in my head, I know that I’m in a wheelchair. But in my heart, I’ve never felt disabled.

The old days at MDA Summer Camp were pure bliss. Camp was nonstop fun and games without a care in the world. I would come home telling stories about what could very well have been a vacation in some far-off fantasyland.

The campgrounds stretched a mile and a half out in the inland empire of Southern California. It was more like staying at a resort. Delicious food was served for breakfast, lunch, and dinner, and dessert followed every meal. Activities included horseback riding, zip lining, and arts and crafts. Our four days at camp would always finish with something called the “Silly Olympics,” which was basically a huge food fight.

All of us kids sat in lawn chairs or on a counselor’s lap so that our expensive wheelchairs didn’t get goop all over them. We were given chocolate sauce and oatmeal to smear on the person sitting closest to us. Later, we were rinsed off with fire department hoses. Despite all the fun, one memory that will always stick with me is feeling like I didn’t fit in.

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Over the years, I have been judged and scrutinized because of my invisible illness. People don’t know what to think when they see a seemingly average 21-year-old in a power wheelchair. During my time at camp, I always felt like I wasn’t disabled enough. I felt like an outcast. Among the seven or so other girls in my cabin, one other girl’s disease wasn’t all that apparent, either. It turned out that she was a carrier of Duchenne muscular dystrophy (DMD), which is relatively rare because DMD usually affects boys.

Having such a rare form of MD can be difficult. It’s hard to find someone you can relate to on a physical level. Until Mom started showing signs of having “Mito,” too, no one I knew truly understood what I went through daily.

A little over a year ago, I started my blog. I wanted to use my voice and experiences to help spread awareness about my disease. So, I got online, chose a domain name, and created a website. As I researched more about being a beginning blogger, I read that I should find people within the same niche. Meaning, I would have to find other chronic illness bloggers.

I found not only other chronically ill bloggers but also people that live a life similar to mine. They know what it’s like to suffer from a relapse or to be told that an illness is all in one’s head. They, too, have experienced how hard it is to have to cancel plans at the last minute because of nausea or muscle weakness.

I don’t mind what label or phrase you use when referring to my illness. It can be handicapped, disabled, or even “challenged by gravity.” I don’t really care, and I won’t take offense to any of them. However, I do know that I relate more to the term chronic illness than disabled.


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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