Date of Diagnosis - - Is This One of Your ALS-related Mental Potholes?

Mental potholes. We all have them. They’re innocently created from some piece of information we’ve read or heard; we store it away in our brain and end up internalizing it. Internalizing positive information helps “get us on down the road.” Flawed, or inaccurate information creates a mental pothole. For example, I’ve taught myself to not put much significance in my “date of diagnosis.”

Now, date of diagnosis is a common medical term widely used in the ALS community. It’s a valuable date to know when filling out health insurance forms and applying for Social Security disability. It’s also used by researchers to determine a patient’s qualification for enrollment in studies. Because most researchers want only ALS patients within two years of their diagnoses.

Doomsday clock

But for many ALS patients, their date of diagnosis carries emotional significance. It’s the day we sat in our doctor’s office hearing the words, “average life expectancy of two to five years,” and then probably tuned out everything else that followed. Soon, average internalized into my life expectancy, and we walked out of the office with an invisible expiration date stamped on our foreheads. Pothole alert!

But think about it, wasn’t your appointment just an arbitrary date selected by the office receptionist???

Plus, we probably had the symptoms of ALS well before this appointment was even made. How many of us spent the months prior, even years in search of a proper diagnosis? What if the receptionist had called and moved the date up, or delayed you coming in? Would that change the karma of it all?

Somehow, for many, the magic of being told starts our life expectancy clock ticking, creating a mental pothole; a self-fulfilling prophecy of doom.

An extra holiday to celebrate?

Here’s how crazy it gets. On Facebook, I’ve come across posts from ALS patients noting and celebrating the anniversary of their date of diagnosis. Announcing, “Hey, everybody, I’ve made it to my two-year anniversary!” Their friends send along hearty congratulations.

I’ll agree that to celebrate living beyond the doctor’s so-called crystal ball is a rebuff of the medical system and life in general. But why create a ritual around a date that foretells something that may not happen at all?

And what about those of us with ALS who have lived beyond the five-year mark? Could it be that – thanks to early intervention, symptom-modifying medications, and therapies, improvements to durable medical equipment, multi-disciplinary clinics, and a wide range of support groups – ALS patients are able to live longer and with better quality of life?

Reality check

So, for me, date of diagnosis is just that, a date on the calendar, one less mental pothole to fall into. I’ll continue to learn, read, listen and stay positive.

When I read, “Life expectancy of two to five years,” the voice in my head adds … or MORE.

When I hear, “No cure,” the voice in my head adds … YET.

I’m not dying from ALS, I’m LIVING with it! And I believe you can too.

Think about it, what are your ALS-related mental potholes?

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Dagmar Munn
ALS and Wellness Blog

A version of this post first appeared as my column on the ALS News Today website.