The Family's Operating System Has a Disability

Issue #12

I didn’t publish anything here for over a month. I told myself it was a break, and part of it was. The other part is that I couldn’t. My pharmacy ran out of my ADHD medication (there’s a shortage again), and the version of me who plans things, sequences things, holds a whole day in her head and still writes you a newsletter on a Tuesday — that version wasn’t available. She’d been running on something, and the something ran out.

I have a disability. Two, if we’re counting — autism and ADHD (Does anxiety or OCD count, too? Chronic depression? Is that five, then? What if the anxiety and depression are just symptoms of the others? Fuck.)

I mean the word as the law means it: a condition that substantially limits major life activities, protected federally for a reason. I qualify for that protection. But I was raised to believe that only conditions that are identifiable by others from the outside are disabilities. I knew this wasn’t true, of course — people have invisible disabilities, and we have no idea what they’re going through day-to-day (and it’s none of our business). But I told myself that I missed that window: I spent too many years being “successful” at life, so I can’t suddenly claim a disability. Very ableist of me.

Anyway, here’s what the most recent med shortage made me look at.

For about 36 years, I ran on white-knuckling. I just pushed through. In my 20s, I had the bandwidth for it — I could lose a whole day and make it up at midnight; I could hold chaos together with sheer effort and call that a personality. I didn’t know there were resources for what I was doing manually. Nobody told me, because nobody knew to look. An elder-millennial girl who read early and tested well doesn’t get screened for autism in the early 1990s.

I first got on ADHD meds in my late 20s; I was diagnosed with Autism at 36. And most of what I feel about that is anger.

I pushed through the first three and a half decades of my life without the things I genuinely needed, not knowing they existed, and by the time anyone handed them to me I was already responsible for other humans. If I’d known sooner, I would’ve had years — years to learn my own wiring while the stakes were low, to build the systems before I needed them to survive. Instead I got the manual right as the job got impossible.

Because here’s the job now. I’m nearly forty. I have three kids under 7. I’m not a W-2 employee — I’m an entrepreneur, which means the only person keeping me on track is me, and the cruel joke is that I actually do best when I control my own schedule. But June was back-to-back networking. The end of this month is three events I’m co-hosting for Seattle Tech Week. The dev team at my company is about to wrap up. There is no breathing room, and the medication that let me fake breathing room is out of stock.

“If I’d known sooner, I would’ve had years — years to learn my own wiring while the stakes were low, to build the systems before I needed them to survive. Instead I got the manual right as the job got impossible.”

This is the part I keep circling back to… the disability is in executive function — the planning, the sequencing, the holding it all in your head. And I am the operating system for a family of five. I’m the manager. The calendar. The one who knows when the forms are due, and the shoes stopped fitting, and the milk ran out. The exact function my brain struggles with is the one everyone depends on me to run, and there’s no accommodation for it because someone has to do it, and it defaults to the mom.

Including from the person closest to me. My spouse loves me, and some part of him still believes that I could push through this if I just tried a little harder — the way I used to before we had kids (we’ve been together since I was 25). There’s a gap between a diagnosis on paper and a partner actually rearranging his understanding of you, and I am living in that gap while also running the household from inside it.

I don’t have a bow for this. I’m not going to tell you what I learned and how I’m better now, because I’m in the middle of it and I haven’t learned it yet.

There is nothing wrong with being disabled, and I am allowed to be furious that I found out this late.

A question for you: if you were diagnosed as an adult — with anything — what’s the thing you’re angriest you had to figure out the hard way, for years, before anyone told you there was a name for it?