I’ve referenced this vestibular thing I have a couple times but never gone into detail, because 1. I have a pretty mild case and 2. I hate whining. But also I think it’s a good idea to explain the disorder a little more, since most people don’t know about it. (Doctors also. Many of them don’t know about it.)

Mal de Debarquement Syndrome (MdDS or MDD, depending on which source you’re using) or disembarkment syndrome is a vestibular disorder that’s usually triggered by a period of passive motion—meaning, riding on a boat, in a plane, in a car or train. You know that feeling when you’ve been on a boat for a while, and then you get to shore and you still feel like you’re rocking on the waves? You “still have your sea legs,” as they say? Right, so imagine feeling that way all the time. That’s MdDS. Your brain can’t readjust to being on land, so your sense of balance is off.

For me—again, I have a mild case, and it’s only recently come back after several years of remission—it feels like the world is occasionally rocking around me, as though I’m on a boat, and sometimes I get a little fogbrained and tired. It was more intense in 2020, the first time I got it, apparently triggered by a plane ride and an extra-long car ride on snowy roads. That time, I felt like walking was more difficult, and the symptoms were constant. I’ve had three rounds of this so far, and each time I’ve gone from regular symptoms to maybe-every-other-day symptoms to nothing. This usually takes about six months. Right now I’m in the intermittent phase, which is good because I got there quicker than usual.

People who have severe cases, say they’re at a 9 or a 10 on the symptom scale, can’t really function at all. Some people have symptoms for years, or forever. There isn’t a cure, but there is a disability code for it. Bonus: Many people have doctors telling them it’s all in their heads. (I’m in an online support group for this. The stories people tell are awful.)

You know it’s MdDS and not vertigo or a similar disorder if you feel fine while you’re in passive motion, meaning in a car, on a plane or train, etc., and the symptoms come back once you’re back on solid ground. You also probably won’t feel dizzy or nauseous; this isn’t motion sickness. It’s the earth in perpetual motion around you.

MdDS is an official rare disease, meaning that if you think you have it, you have to explain to your doctor what it is before they can recommend treatment. (Ask me how I know!) Treatment can involve medication, usually SSRIs, or vestibular rehabilitation therapy, which is offered at some physical therapy facilities. I did vestibular rehabilitation for a few weeks in 2020, right before the whole world shut down, and I still have my list of at-home exercises to do as needed. There are also ways to manage or lessen MdDS symptoms, say by using walking sticks or canes if walking is difficult. I wear EarPlanes during flights; they’re basically earplugs that you screw into your ears during takeoffs/landings to lessen the severity of the noise and air pressure. Yes they look ridiculous, no I don’t care.

If you’re interested in learning more about it, or if you think you or someone you know has this weird thing, the MdDS Foundation offers a useful website. It’s how I realized I had MdDS in the first place. And this year’s Rare Disease Day will be marked worldwide on Feb. 29, in case you want to get involved.

The way I figure, if it’s a rare disorder that doctors don’t always recognize, then there are people who have it and don’t know what’s wrong with them. Which is why I’m writing about it. Hoping this is helpful to someone out there.