How I got here

My body had been going wrong for most of my life. A few years ago it stopped being manageable, and I kept pushing for about a year before my body ended it for me.

I started getting migraines when I was eight. What I was told was that I was fine. Nobody in my house was ignoring me. Headaches were just something you had, and everybody agreed that what was happening to me was normal. I was twenty-two before I found out that the thing I'd had for fourteen years had a name, and had been sitting there the whole time with treatments attached to it.

It should have taken one curious adult and an afternoon. It took fourteen years and a student health plan.

Those fourteen years were two different problems. For the first eight I was covered and nobody took me. For the next six I had no health coverage at all, so there was nowhere to take myself. Same headache the whole time, two completely different reasons nothing happened.

That's the first thing I ever learned about my own body: that what I said about it wasn't going to be taken at face value, and that if I wanted an answer I was going to have to go and get it myself. I've been doing some version of that ever since.

I was still working when the agonizing pain started. I didn't know what was happening to my body. I assumed the doctors would. I was wrong about that, and it took me longer than I'd like to admit to figure out how wrong.

I saw one specialist after another. I'm a lifelong overachiever, so I tackled being ill the way I tackled everything else, with as much gusto as a woman with chronic fatigue can conjure up. I followed every suggestion. Every protocol. Every referral. I was a model patient. And I was bereft when none of it made me feel normal again.

At one point I was taking about fifteen different medications. I'd lost strength in my arm and my grip was going, so opening the bottles became almost impossible. Every week I dreaded filling my pill organizer, because it meant my husband opening every single bottle while I sat there directing him. There has got to be an easier way. I thought that about a hundred times before the brain fog lifted enough for me to go looking. Everything I found had a flaw I couldn't get past. The price, or the design, or how hard the thing was to actually use.

When I couldn't find the things I needed, I started making them. The first was a medical binder, because nobody was going to keep track of my care if I didn't, and I'd already learned the hard way that what I said about my body wasn't admissible unless I'd written it down first. I learned that at eight and relearned it at forty. That binder got me through the next round of appointments. It also made me realize there were millions of women doing the same thing, and nobody was building anything for us.

So I did. Not from a business plan. From a stack of notes I was keeping anyway.

Here's what I didn't know at the time. The binder wasn't the first thing I'd built. I was diagnosed with ADHD in my forties, the way a lot of women are, and after someone in my family was. I'd spent decades making scaffolding for a brain that needed it without ever knowing that's what I was doing. Lists, systems, structures, everything written down and taped up and rebuilt when it stopped working. I thought it was a personality trait. It turns out I'd been accommodating myself for years, long before anyone told me I had a reason to.

That's three times now. Migraines I had no word for until I was twenty-two. ADHD I had no word for until my forties. And an illness it took eight diagnoses to describe. Every single time the thing was already happening, and the only variable was whether anybody had bothered to name it. A thing being unnamed is not the same as a thing not being real.

So now I write about both the body and the brain, because I'm managing both. Organizing advice assumes the hard part is remembering. Chronic illness advice assumes the hard part is having the energy. For me it's usually both at once, and almost nothing is built for that.

The binder was the first thing I made. It wasn't the last. Once I started paying attention, I found the same neglect everywhere. Nobody had built the binder at all. And the things that did exist, the kitchen tools and the bathroom equipment and every product sold to a body like mine, were ugly. Not because anybody decided we wouldn't mind. Because nobody making them ever pictured us at all.