This Year’s SMA Conference Was a Blow to My Impostor Syndrome

Three years into my collaboration with biotech company Genentech, and I still feel like a fish out of water.

This is what professionals call impostor syndrome (IS), defined by Lexico as “the persistent inability to believe that one’s success is deserved or has been legitimately achieved as a result of one’s own efforts or skills.”

As someone with a master’s degree in counseling, I’m well versed in conditions such as IS that affect a person’s ability to thrive in professional settings. But it’s a different kind of knowing, experiencing it for yourself.

It’s not just that my colleagues have more followers than me. It’s that they have families. They have partners and book deals and incredibly successful nonprofit organizations. They excel in everything they do. Compared with them, I feel undeserving.

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But the fact remains. The reality, while strange and seemingly illogical, is undeniable. Late last month, I sat in a conference room at the Disneyland Hotel and talked with professionals and influencers alike about the future — not just of SMA My Way, the patient-focused community I’ve been working on with Genentech, but the SMA community at large.

Three years into this, and I’m still star-struck.

As part of this year’s Cure SMA conference, I was fortune enough to participate in a conference workshop alongside fellow SMA News Today columnist Kevin Schaefer. We talked with SMA influencers Allie Williams, Kevan Chandler, and Shane Burcaw about advocating through writing and social media. It was my first time participating as a panelist, so you can imagine my anxiety.

I’m not a performer. I’m not even a public speaker. I’m most comfortable behind a screen, tapping out sentences on my on-screen keyboard. But there I was, seated in front of a pretty sizable audience, pretending as though I know something — anything! — about advocacy.

Don’t get me wrong. I know some things. I know about hashtags and search engine optimization, and, yes, even the algorithm. I know about burnout, and what it means to be a disabled creative in a world that does not value disabled creatives. I write my silly little books and post my silly little Reels. I occasionally write Twitter threads about living with a disability.

I don’t feel like an influencer. But I am. Most days, I struggle to believe that.

Then there are days of supreme irregularity. Days when I talk to a room full of patients and caregivers about advocacy. Days when people refer to me and the other panelists as “powerhouse influencers.” Days when my frustrations and insecurities fade to the background. All that matters is my community. The people I will fight for until I die.

Reading back this column, I feel conceited. But I don’t mean it that way. I write this — and columns like it — because I want to be honest about my journey. Sometimes that honesty leads to pessimistic jeremiads about my future as a writer. And sometimes it leads to this.

The disbelief.

The joy.

Gazing out over the crowd, I felt that familiar twinge of anxiety. But it was quickly replaced by gratitude. IS or no, I was there. I wouldn’t give it up for anything.

Later, after the panel, I was told the workshop was one of the most popular of the conference. The room was too small to accommodate everyone who wanted to attend.

Weeks later, I still can’t believe it.

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Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.