Community is nonnegotiable for thriving with a rare disease

When I returned from the annual Cure SMA conference this summer, I knew something needed to change.

I made a list of everything I’d been putting off, like finding a new therapist and setting up the photo shoot I’d been dreaming of for over a year. Then, in a fit of daring, I scheduled an introductory call with one of our very own, Amber Bosselman, a life coach specializing in disability.

I mentioned in a previous column that I’ve developed a complicated relationship with mental health therapy. For most people, I’m a big proponent. The more therapists I try, though, the more I realize that therapy has run its course for me personally. I’ve run out of things to therapize. What I really need is someone who understands disability and can support me with practical action items.

Can you see how Amber ticks every one of those boxes?

I’d considered life coaching before, so I knew vaguely what to expect going in. I was nervous all the same. Amber and I have seen each other several times at various conferences, so we had that going for us. I was sold, though, when Amber assured me that life coaching was for me. I could show up however I was feeling in the moment. I don’t remember what I was going through at the time — I’m sure it was something — but hearing that was an almost immediate balm.

Folks with spinal muscular atrophy (SMA), or any condition really, will know what it’s like to make space for someone when they’re supposed to be making space for you. Explaining your disease to a doctor who’s supposed to be familiar with it. Describing what life is like to a therapist who, bless their heart, is trying their best, but still struggling to understand. It’s exhausting. It never ends. You’re always on display, performing disability for those who don’t know any better.

It wasn’t like that with Amber, and I could tell almost immediately.

Recommended Reading

November 25, 2025 Columns by Kevin Schaefer

Alice Wong sparked a fire in all of us in the disability community

The importance of community in disability

Community is powerful. I’ve written so many columns about the topic, yet every time I feel like I unearth something new. At the end of the day, all I really know is that I can’t believe I went so long without it.

How do we survive without community? The older I get, the more I realize we can’t, not if we want to thrive. We need to be understood. We need to be seen, and not just by any old random person we come into contact with, but by someone who gets it. Someone who knows. It’s the age-old problem of sympathy versus empathy. Anyone can sympathize, but it takes someone who has been in our shoes — figuratively, yes, but literally, too, as some of us have such unique feet that even our shoes have an SMA twist — to empathize.

It’s why I believe so strongly in our mission here at SMA News Today. It’s why I’ve worked at Bionews, the parent company of this website, for a whopping eight years. (Or is it nine? At this point, they all blur together.) We have to live in community. And when our bodies prevent us from doing so — when the weather keeps us from going outside, or when sickness prevention has us staying home, where at least the germs are our own — then we look to the internet, pockets of closeness that we have carved out over years of advocacy, companionship, and communal grieving.

In an ideal world, these things would come easily. Community would occur spontaneously and without toil. But this is not an ideal world.

We must fight for it.

We must pursue it.

We must take chances on it. Schedule an introductory call with someone we’ve met in passing, not because we’re desperate (though we are), but because we believe, even when times are hard, that things can and will get better. That in the vast, wide world, there are people we have not met who will love and see us for who we are.

Thanks for reading! You can follow me on Instagram and Threads, subscribe to my newsletter, or check out my website.

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.