In the stillness of my room, a voice says to me, “You should quit social media.” It’s not the first time I’ve heard this voice. But it’s the first I’ve given it any sort of consideration. It’s 4 a.m. and my brain is a pinball machine, bouncing between thoughts. I’m…

Every once in a while, I’m seized with unbearable jealousy. That’s not true. It isn’t jealousy so much as a sense of falling behind. Social media, while great for some things, is horrid when it comes to self-comparison. Every day, we come face to face with the many ways…

It’s been a minute since I put my degree in counseling to good use. Let’s change that, shall we? Last week, I wrote about a recent ghost vacation. For those who didn’t read that column, here’s the gist: I came back from this year’s Cure SMA conference with a…

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…

Every August, I sit across from a nurse and prove that I am, in fact, still disabled. Disclaimer: I completely understand why assessments are necessary. I’m the beneficiary of countless government programs, from Medicaid to much-needed support funds. I’m not just blessed, I’m privileged as all get-out. I dislike the…

From a Zoom book discussion to candle lightings, efforts to mark Spinal Muscular Atrophy Awareness Month, observed each August, are underway to increase awareness of this rare genetic disease and raise funds to battle it. Supporters are involved in a range of activities that including swapping out their social…

Let me set the scene. I’ve finished my morning routine of meditating and emptying my inbox. I scroll through Twitter for a few minutes, knowing I should get started on my column for this week, knowing I’ll feel better about myself…

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

I looked up the definition of “minority group” the other day, and it was defined as “a group that is different racially, politically, etc., from a larger group of which it is a part.” I was prompted to think about the term…

In 2017, writer Keah Brown created the hashtag #DisabledAndCute. To Brown’s astonishment, this phrase sparked a viral social media movement. As the hashtag flooded her Twitter and Instagram feeds, Brown saw countless individuals with disabilities embrace a message…