Why I prefer empathy over pity in life with SMA

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by Alyssa Silva |

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“Please don’t feel sorry for me when I don’t feel sorry for myself.”

These are the words I wish I could tattoo across my forehead anytime I’m out in public. OK, maybe that would be a little over the top. Perhaps I’d settle for a sign hanging from my wheelchair. After all, if people are going to stare, I may as well turn it into a teaching moment.

That’s because, in my 33 years with SMA, I’ve noticed society is apt to express pity toward me in a patronizing way.

Of course, life hasn’t been easy living with a progressive neuromuscular disease since birth. I’ve had my fair share of challenges and setbacks that molded me into who I am today. I’ve been robbed of the same opportunities as my nondisabled peers and have felt the overwhelming and exhausting pressure that comes with trying to manage my health. So I imagine pity is other people’s way of acknowledging those many facets of my life.

However, as well intentioned as people may be, they often don’t know what I go through daily, despite being quick to judge. They also don’t realize how wonderful my life truly is.

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Living with SMA isn’t an invitation for pity

Pity can be damaging and disempowering when directed toward someone with a disability. For me, I’ve always interpreted it as a person implying I live a life of suffering. Yes, I have dealt with more challenges than the average person. Yes, I have suffered from time to time. But to assume someone lives a life of suffering because they have a disability is a harmful stereotype that is often disguised as pity.

Pity can also undermine a person’s strength. Living through my challenges — and even my suffering — has granted me the emotional strength to fight each battle and the resiliency to overcome the next one. I am grateful to SMA for this reason. So when others make the effort to show pity after hearing about things I’ve endured, I wish they’d instead acknowledge the strength it took for me to overcome those obstacles.

I understand it’s human nature to want to express pity when someone is perceived to be hurting. I’ve been there, too. But after being on the receiving end of these misguided, albeit thoughtful, remarks for far too long, I’ve learned to lead with empathy instead. And this is something I try to remind others when they are feeling sorry for me.

When I lead with empathy, I can offer greater connection and support. I can cultivate more understanding and compassion. I can do my best to empower and uplift people.

My life with this rare disease isn’t an invitation for others to pity me. I may face more challenges than many, and I may not have had my life handed to me on a silver platter. But a fulfilling life with SMA is possible, and I’m living proof.

Note: SMA News Today 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 other 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 SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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