What Being Rare Means to Me

Throughout February, many patient columnists like me who write for Bionews, the parent company of this website, are writing columns recognizing Rare Disease Month, which culminates in Rare Disease Day on Feb. 28. Not only are we encouraging our readers to reach across patient community lines to learn from each other, but also to explore what it means to be rare.

With about 7,000 rare diseases affecting some 30 million people in the U.S., you’d think I’d be hard-pressed to consider myself rare. But I do.

I’m typical, but …

Although ALS symptoms vary among patients, medical experts have identified common paths and rates of progression. Typically, ALS first affects the muscles in the arms, hands, and legs in two-thirds of patients. As the disease progresses, muscles become progressively paralyzed, and patients experience difficulty in speaking, swallowing, and eventually, breathing. The mean survival time is two to five years, with some people living five years and others living 10 years or longer.

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When I was diagnosed with ALS in 2010, I experienced weakness in my feet and lower legs, causing me to trip and fall. So far, my hands are unaffected. But six years later, it became difficult to form words, and I’d choke when swallowing thin liquids.

Today, having reached the 12-year mark, I’m still walking (with the help of a rolling walker), I use a thickening powder in my drinks, and I’m able to speak slowly with effort. Clearly, the progression of my symptoms has been slow and nontypical.

How do I feel about that? Very grateful — and rare.

The side issues of longevity

My so-called rareness has had a few surprising downsides.

The ALS community extends around the world. With the help of email, online forums, and support groups, I’ve made many long-distance friends. We correspond, share tips, and support each other.

But several times a year, I receive news that one of my ALS friends has died. It’s always sad and shocking, but also a reminder of our fragile existence and continuing lack of treatments and a cure.

Then there was the time an ALS patient chastised me on social media

I was in an online discussion with other patients and sharing tips on what I do to maintain my speaking ability. Upon learning that I’ve been living with ALS for 12 years, one person wrote that she was certain I had been misdiagnosed or maybe an imposter. She was adamant and even suggested I be banned from the group. Yuck! That felt awful.

I managed to ask how long she’s had ALS. Six months was her reply. Sheesh! I guess “experts” are lurking everywhere. I simply let it go, knowing she was probably in the early angry phase of acceptance. And it was social media.

More experts

In the minds of many ALS patients and their families, longevity continues to equal expertise — and that’s not always the case. I’m often quizzed about what I eat, whether I take supplements, what medication I’m on, if I follow a special exercise routine, and so on. I could be tempted to offer an exclusive and expensive course of my lifestyle “secrets,” but I know better.

Sure, my current life is not what I had envisioned for myself 12 years ago, but here I am. And my attitude is that it was the ALS community’s lucky day when I, a wellness expert and motivational speaker, joined their ranks. I can call myself rare, and just what this community needs.

I openly share what’s working for me. It’s what works for any human needing resilience, facing adversity, and coping with ongoing change. I also let my fellow patients know that we are part of a larger community of rare diseases, and that if we pay attention and learn from each other, we won’t feel so alone in our individual challenges.

Let’s help each other live well while living with ALS!

Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.