The Trouble With Saying “You Are Not Alone”

I took a big step today, and I’m glad I did.

Years after my dad told me about his diagnosis, I finally joined an online community for people with Parkinson's disease and people caring for people with Parkinson's disease.

I met a stranger online with remarkably similar circumstances as me. For the first time, I felt like I was not alone.

It got me thinking about feeling lonely. Why didn’t it help when other people tried to comfort me?

Joining an online community for Parkinson’s support finally helped me feel like I was not alone. What was different this time?

I admit I’m a bit of a pessimist, and let’s not jump to blame. During the pandemic, the phrase “you are not alone” was all over the media.

Instagram, “You are not alone”.

Woke brand TV ads, “You are not alone”.

National news broadcasts with the message, “You are not alone”.

What’s the trouble with saying “you are not alone” too much?

People with exceedingly positive attitudes made it a cliche.

I felt alone, and no matter how many times you people told me I was not alone, I still felt alone. It didn’t solve my struggle. It showed me how much better other people were dealing with their struggles than me.

It didn’t speak to me. I didn’t have a community around me, who understood me, who knew what I was dealing with.

I felt alone because I was in my house alone with my troubles, and the only people telling me everything's OK were mass media outlets who didn’t know my story. It’s my fault I didn’t get out of the house more.

I was perturbed because no one wanted to help me. Now I know better. It’s my job to find people who are happy to help.

When I joined MyParkinsonsTeam, the online Parkinson’s support community, that person with remarkably similar circumstances said verbatim “It feels good to know I’m not alone”, and for the first time ever, it settled well with me.

How “You Are Not Alone” Commercialized

Here’s what it was like before.

(Skip this part if you don’t like complaining… Yikes, I was full of resentment…)

The back of my head kept telling me… When a money-making media outlet or social media star fed me the statement, it was based on broad market research where they knew people in general wanted their struggles to be validated.

The message went flat when I second-guessed the messenger’s motives. They don’t know me, so they're either expressing legitimate compassion for their followers, or it was just a ploy to grow, engage, and retain their audience.

Since they didn’t know me, they couldn’t possibly feel empathy. You need to know my unique circumstances first-hand to speak to them with credibility.

The First Time “You Are Not Alone” Felt Authentic

It was different this time.

The person with remarkably similar circumstances was in her 30s (I’m 35). Her mother was diagnosed with Parkinson’s and Parkinson’s Disease Dementia (like my father). She sacrificed her job in another location to move back to her childhood home to care for her mother (like I did). She felt immense financial pressure as she didn’t qualify for state-funded caregiver assistance (like my middle class family). Her mother regularly shouted for help, help, help despite the fact she is physically able to do the thing (like most mornings and evenings in my household). She works around the clock, loses sleep, weeps frequently, and feels physically and emotionally drained (like I do).

Indeed, my circumstances are remarkably similar to hers.

Meeting her changed my mind. She knows exactly how I feel. She and I are demonstrably not alone in our struggles, and that is a powerful message of hope.

Meeting a person with remarkably similar circumstances as me, finally made me feel like someone else knew exactly how I felt. I didn’t feel alone in my struggle.