What Does ALS Look Like to You?

The other day, while skimming through a list of reader comments on ALS News Today, I ran across one remark that stopped me in my tracks. It was a complaint regarding the photo that accompanies this column. The reader thought the woman in the wheelchair looked too healthy and happy, and suggested using a photo of a person “dealing with ALS.”

Wait a minute! Red flags began waving madly in my brain.

When did having ALS require a certain “look?” And …

Why can’t I be happy and healthy despite living with ALS?

After a few days pondering the issue, I came to the conclusion that ALS does need different “looks” — but for different purposes.

Creating the stock ALS stereotype

First, we have to accept the fact we live in a world of stock photos. Generic images are created more to capture our attention than to provide authentic portrayal. And, ALS is a challenging disease to image. Much like trying to photograph a slow-motion car crash, exactly where in the timeline of the crash or stage of ALS that the shutter clicks creates the model image. Thus we have the choice of either happy and healthy, or sad and apathetic.

Second, we really do need to show more diversity in stock photos. ALS strikes both young as well as older adults. Silver-haired senior citizens aren’t the only ones pushing walkers, rollators and riding electric scooters. Not all caregivers are the wife. ALS strikes moms, daughters and career women as well as men. The stereotype of an elderly person in a wheelchair can be changed by expanding the options we have to select from.

But stereotypes work

I’m still amazed that a disease that affects 450,000 people worldwide and has a lifetime risk of 1 in 400 still needs an awareness campaign. But it does. And I’ll be the first to agree that an image of happy ALS patients doesn’t raise dollars. But videos of ALS-affected football players and celebrities do.

Who is your role model?

The world is made up of optimists and pessimists. As you probably know by now, I consider myself a glass-is-half-full optimist. For example, in my take of the photo above, the woman on the left has ALS and she’s visiting a friend who happens to be in a wheelchair due to some injury or recent surgery.

What image do you hold in your mind: a happy, healthy ALS patient or one who is sad and apathetic?

Why not become your own positive role model?

To help you achieve this goal and bring balance to your life, I share these tips: stick to a daily routine, eat well, sleep well, do moderate exercise, interact with others, have a positive mindset and find a way to express your talents.

Let’s change the “look” of ALS.

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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 Services, and are intended to spark discussion about issues pertaining to ALS.