I’ve never considered myself to be insecure about my disability. My use of a mobility aid has never dulled my social butterfly persona, except on a few occasions when I’ve communed with other people with disabilities and had to face the reality of my own disease.
Other than the few friends I made at muscular dystrophy camp, I didn’t have any close connections to other disabled kids. I found I was always more comfortable around able-bodied kids because that was how I viewed myself. I felt more like Leah around my able-bodied friends and not “Leah in the wheelchair.” For years after camp, I distanced myself from those within the disability community, fearing a recurrence of my lack of confidence about my disease.
While creating a personal blog about my life with mitochondrial myopathy, and then working for BioNews Services, I realized that I finally had reached a point of acceptance. I began immersing myself in the disability and chronic illness communities through social media.
Scrolling through Instagram posts and watching YouTube videos of people with similar challenges gave me a sense of solace. I felt relief knowing that although my disease might be rare, my circumstances aren’t. Others also have been denied medical care by physicians because of the invisible nature of their illnesses. They, too, have endured discrimination and had their rights to an accessible world violated.
One Thanksgiving at a friend’s house, I met a little girl who immediately took an interest in me because she lived with a chronic illness. As our connection continued, I started to become a type of mentor to her, helping her through scary and unpredictable moments that inevitably come with any disease.
While mentoring her, I realized just how vital it is to have someone to relate to and to share empathy with.
Like most people, I’ve been video chatting with friends during this time of self-isolation. It’s a consolation to know that they’re staying safe and healthy. I’ve particularly enjoyed chatting with Noemi, a girl my age I met a few years ago while sitting next to her in a doctor’s office.
We keep each other laughing with our talks about unpalatable hospital food and the funny attributes of our dogs. During our conversations, we share similar stories of circumstances caused by our disabilities and the challenges of being women in wheelchairs, as if we possess a telepathic connection.
Although sympathy is appreciated, there’s nothing quite comparable to empathy. The ease that comes with being able to truly relate to someone else is powerful. These connections are vital to ensure that we don’t feel as if we’re fighting this battle alone.
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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