How I Learned to Speak Up for ALS Awareness

 “I didn’t even know ALS existed until I was told I had it.”

That’s what most patients say when telling their ALS story. I said the same thing when asked to share my story at an event in 2010, and I hear the same thing from others today, 13 years later. The ALS community clearly needs to expand its awareness campaigns.

Do you feel intimidated talking about yourself or your ALS, or perhaps you don’t know what to say about ALS? Then read on. I’ll tell you about my first experience sharing my ALS story, and share tips on how you can do it, too.

A reluctant story

A few months after my diagnosis, I was surprised by a phone call from my neurologist. Rather than having a medical conversation, she instead invited me to speak at a local ALS fundraising event.

Although I’ve always been comfortable speaking to large groups about any number of wellness topics, sharing my personal ALS story with total strangers suddenly felt intimidating. My mind raced as I wondered exactly what my ALS story was. And if I told it, would I break down in a puddle of tears?

My neurologist was waiting for an answer, and I knew I couldn’t back out. Reluctantly, I agreed to show up.

Like many newly diagnosed ALS patients, I rode a roller coaster of emotions. I felt sorry for myself, wondering why there was no cure, and worried if my family and friends would pity me rather than support me.

As it turns out, my experience at the fundraising event completely erased all of my earlier misgivings. I spoke from the heart, and in return, I felt the compassion in the room and the support surrounding me. My husband and I had a great time and happily joined in the cheers when the announcement came at the end of the evening that the event had reached its monetary goal.

I’ve since gone on to speak at other ALS events, both online and in person. Besides knowing I’m doing my part to help others learn more about living with this disease, it also is cathartic. The more I write and talk about ALS, the more I accept having my ALS life.

My tips

What’s the best way to tell your ALS story? Well, don’t begin by recounting all the medical tests and exams that led to your diagnosis. Instead, I suggest you answer these three questions:

·        How has ALS affected your life?

·        How has the ALS community helped you?

·        Name something you wish more people understood about life with ALS?

I know it’s hard to speak up and talk about a disease. It takes gumption to tell your story. But we need you. We need more and louder voices and bigger signs.

Opportunities are everywhere, as simple conversations happen all the time. Just show up, join a Zoom call, or start a conversation about ALS with your friends and suggest a local awareness activity.

The perfect time to begin is now because May is ALS Awareness Month.

I have a few more tips and ideas for you in this post: Mayday! Mayday!

...and the story behind this photo!

Speak up! Help us live in a world without ALS.

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Dagmar Munn
ALS and Wellness Blog

 "Don't expect to make a difference unless you speak up for yourself"

Laurie Halse Anderson