Your perception of multiple sclerosis probably isn’t my reality

There are several good reasons why you won’t see me in television commercials for multiple sclerosis (MS) treatments anytime soon. For one, I’m not much of an actor, despite my brief moment of high school fame. For another, even though I wouldn’t go so far as to say that I have a face made for radio, I will say that I don’t have the voice for it. I could be wrong, but I doubt anyone wants to hear my increasingly weak and hoarse croak in my deep Southern drawl.

Those concerns aside, the actual reason I won’t be a pitchman or performer is that I wouldn’t be a good representative for the medication. I have primary progressive multiple sclerosis while most people with MS have the relapsing-remitting variety. I’m pretty disabled compared with many with MS and wouldn’t be a good image of an average patient, much less the one advertisers would like to show.

And I don’t begrudge them that choice. After all, it’s advertisers’ job to create a commercial that shows their products in the best possible light — and here, that means it’d prompt a doctor to prescribe the advertised disease-modifying therapy (DMT) and persuade patients to ask for it. What I do begrudge is that your average person is likely to base their perception of life with multiple sclerosis on what they see on TV. That’s often a problem because my reality, and all of our realities, are very different from that televised image.

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What I’ve learned

I have the authority to say that because television is where my perception of MS came from, at least until nearly two years after I was diagnosed. Nearly everything I knew about the disease before my diagnosis (which was little more than its name) came from some form of advertisement.

Amazingly enough, the neurologist’s revelation that I had MS didn’t immediately enlighten me with all there was to know about life with the disease, either. I spent the first 20 or so months trying to learn about MS from an outside perspective by exploring all I could about the disease itself, but little to nothing about the patient who had it — me. That led to confusion, second guessing, and wondering why my course of MS wasn’t going exactly like someone else’s.

I’d say that I know more now, but what I mainly know is my own experience. And the most important thing I know now and didn’t get from an advertisement is that my day-to-day reality isn’t yours. Multiple sclerosis is not a one-size-fits-all disease

There are vast differences among people with MS when it comes to their symptoms and experiences. That’s what comes to my mind when asked what I’d like people to know the most. Your perception, which could have come from an advertisement, a book you read, or your one relative with multiple sclerosis, isn’t my reality. I also have to be aware that my reality isn’t the same as another person’s with MS. Multiple sclerosis is not a “one size fits all” disease.

This quote may have originated with another condition, but it’s become one of my favorites for ours: “If you know one person with MS, then you know one person with MS.”

According to the National Multiple Sclerosis Society, more than 2.8 million people worldwide have multiple sclerosis. To me, that means over 2.8 million individual experiences. With those numbers, it also means that MS isn’t exactly a rare disease.

Each case of MS is definitely unique, and that’s an awareness that deserves to be spread on today’s Rare Disease Day, or any day.

Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.