Celebrating the Inner Strength of People With Rare Diseases

An object is often considered rare when it has unique, sought-after qualities. But Rare Disease Day, observed on Feb. 28, is about people, not objects. Those of us with rare diseases acquire unique qualities through our experiences. Out of the smoke and ashes rise strong people.

Some might think, “So those with rare diseases have the unique ability to withstand suffering?” Not at all. Our amazing superpowers allow us to mold our own lives, rather than simply allow life to happen to us. This requires strength of heart and mind, which I believe to be true strength. Those of us with rare diseases like SMA demonstrate what this looks like.

So, what unique superpowers has SMA bestowed upon us?

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Recently, SMA News Today columnist Halsey Blocher wrote that the disease has taught her and other members of her generation qualities such as gratitude, resilience, and empathy.

Many people these days are starving for heartfelt empathy. Those of us with SMA can build bridges with other communities by expressing empathy, which takes a lot of strength and courage.

Rare diseases have a way of teaching people how to be strong from an early age. I was practically born on the ropes, and spent the first few years of my life dealing with one bout of pneumonia after another. However, it takes far more strength to get up after a punch than it does to withstand the impact.

Perseverance is my way of getting up. It’s my superpower. Yes, there are times when I want to quit — not because I’m sick, but because the related pressures get me down.

I’ll say things like, “They’ll have to find another home-care advocate to write all of these emails to legislators. I can’t do it anymore!” Or, “If one more nurse turns down my case, I’ll go crazy!”

I mean what I say in the moment, but give me a day or two to regroup. Then, when I return to writing my emails and searching for nurses, my resolve will be stronger than ever. The strong “muscles” of my heart and mind enable me to persevere.

For last year’s Rare Disease Day, I wrote about another one of my superpowers: the ability to fly under the radar and read people’s emotions. There could only be a few people in a room, and I’ll likely still be invisible to someone. But I’m very much present as I work to study and better understand others.

Many people choose to strengthen their body with physical weights. Those of us with rare diseases don’t have another choice when trials demand that we strengthen our hearts and souls, but that’s precisely what makes us so strong. We’re bodybuilders of the spirit.

Let’s help one another carry the heavy weights and burdens that life gives us. By doing this, we honor Rare Disease Day all year long.

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.