Can we talk about your disability? Yes. I’m very happy to talk about what I can and can’t do and what I need to be able to do my job. Some of this is a bit unusual, so I share certain medical details below for context. Note that this is not an invitation to ask me for further medical details.

Got it. What is your disability?  I have an unusual structural condition whose most troublesome effect seems to be that blood doesn’t get up to the back of my brain very well. There are a lot of critical systems in the back of the brain, so as you can imagine, this causes all kinds of issues. I might also have mechanical strain on my spinal cord, which would not be a good thing to have either, but the jury is still out on that.

Can I see a picture? Sure. Below is a 3D rendering of a CT scan of the right side of my neck, showing my top rib on my right side, which is actually a kind of “Ribzilla” made out of the top rib and the next rib. By comparing it to the other ribs, you can see it’s a lot bigger than ribs are supposed to be. Ribzilla seems to be the cause of a problem I have with one of the arteries that take blood to the back of my head. This is not at all the whole story, but it is certainly the most striking part of it.

a CT scan from the right side of the neck with a large rib visible
3D rendering by Matthew Binder

How does it affect your day-to-day activities? In a number of ways. Hearing and vision are affected. I have sensitivity to sound and light that can at times be very painful and tiring. I have auditory processing problems, and my brain keeps trying to move my eyes inappropriately in a way that can make reading difficult. I have variable triple (!) vision in each eye; below is a mockup of how I sometimes see the letter L.

There are more systemic issues as well. Perhaps the biggest problem is that my head feels pretty awful whenever I am upright, almost like I’m going to faint. Standing is worse than sitting; walking is usually better than either since leg motion pumps blood up to the brain. Because my body is working hard just to keep me upright, even ordinary activities can give me extraordinary symptoms afterwards. In general, I can do a little of just about anything, including travel, if I have enough time to recover, but I can’t regularly do as much as most other people do. I work mostly from home, mostly reclining on my couch, and am able to work that way (also: vive le CNRS).

What does it mean to have a “dynamic” disability? My condition is “dynamic” in the sense of changing a lot from day to day and from hour to hour (here I’m following my own advice (Copley 2018) to specify whether the term dynamic is intended to mean ‘characterized by change’ or ‘characterized by energy’. It’s ‘characterized by change’ here, based on usage in the disability community). Some of the changes in my level of disability are unpredictable, which means it can be extremely hard to plan ahead; others are fairly reliable. Adrenaline is excellent at getting blood up to the brain, so if you see me giving a talk, for instance, you will probably see nothing wrong. I can be “fine” for a while when I’m out and about, and I push through, but when I finally, reluctantly, quit, I’m often past my limit, and at that point even interacting with people and making simple decisions is very difficult. Close friends and colleagues know the thousand-yard-stare that says I’ve gone past my limit; only my family knows the price I pay afterward.

If you are giving a talk or attending a conference in person, what do you need? An easy schedule skewed toward the afternoon and evening, not too many stairs, not too much crowded public transit, no really noisy restaurants, a way to put my feet up when I am sitting, and a private place nearby where I can lie down when I need to.

What do you need people you work with to understand?  That I have a disability even when I look fine, because it’s exhausting to have to “perform” my disability to make it legible to others. That what is hard for me or easy for me at any moment may not make sense to you. (For example, I usually cannot take phone calls because of my auditory processing problem and sensitivity to sound. Please, if you’re trying to get in touch with me, send an email.) That “easy” details or tasks may slip my mind. Also, that I may at times be unable to communicate, understand, or participate, especially in French, and that I may drop out of a situation without explanation.

How did you get diagnosed? With great difficulty, and only very recently. I’m not joking when I say it’s been a second research career for me over the last 15 years.

Are there treatments? What is the prognosis? These are questions about medical details so I’ll pass.

What do you want people to know about disability? There are many different ways to be disabled and many different ways to live a good life while disabled. Disabilities aren’t shameful or taboo, they are just a part of life, and they can’t always be “overcome”. When a disabled person talks about their disability, non-disabled people often get anxious that the person might be “defining themselves by their disability” (whatever that means). But it’s normal for people to talk about things that affect their lives. If you have a visual disability such as an astigmatism, and you talk about your vision, no one says “yes, but don’t let your astigmatism define you.”

What do you want people to know about difficult-to-diagnose illnesses? Specialized knowledge in medicine is extremely distributed and patchy. A medical saying goes, “When you hear hoofbeats, think horses, not zebras.” Reasonable, but it leaves out any zebras that may be around. Many difficult-to-diagnose chronic physical illnesses get mistaken for mental illnesses, which is a problem only because it’s mistaking one illness for another; treatments for one illness may well harm someone with another illness, whether the illnesses in question are mental or physical (or both). Many times, too, even easy-to-diagnose illnesses are mistaken for Poor Moral Fiber, which I assure you is an experience that needs to be yeeted into the sun so that no one else has to experience it ever again.

What advice do you have for other people with difficult-to-diagnose illnesses? Try to find your people online, even if you’re not initially sure who your people are. Keep in mind that diagnoses are imperfect ontological theories. Do a search on “medical epistemic justice”. Rest if you can, and be kind to yourself.