The room dips right, and I stumble, grabbing the back of the white chair in front of me for balance. Immediately, I glance around to see if anyone noticed me fall from simply standing still. Though I’m in a room full of people with chronic conditions, I’m embarrassed.
Fearing the perception
Dizziness is my most humiliating migraine symptom. I’m constantly tripping, and I can rarely turn a corner or walk down a long hallway without banging my right shoulder on the wall, a doorframe, or some permanent fixture—like the lockers I repeatedly banged into in high school. Unless I’m crouched low in a yoga pose, jumping up into a roundhouse kick, or dancing (all of which, for some reason, restore my sense of balance), I pretty much look like someone desperately trying to hide the fact she’s drunk. Which is exactly what scares me.
It’s hard enough to fight the stigma of migraine disease without compounding the fight with the stigma of addiction or alcoholism. I am not an addict, but I do occasionally take the types of medicines people often associate with addiction—narcotics and benzodiazepines. That alone makes me worry I’ll be perceived as weak or self-indulgent, especially considering there is stigma associated with these drugs even inside the migraine community. Add stumbling around to the mix, and I simply want to hide.
Frustratingly, there is little anyone can do about migraine associated vertigo. Apart from treating and then ruling out Meniere’s disease, no one has ever been able to offer me a course of treatment for this particular symptom. Even when I’m on a preventative that appears to be reducing the severity and frequency of the head pain that comes along with my migraine attacks, the dizziness remains.
It is this symptom above almost any other—except, perhaps, the Alice in Wonderland syndrome I still experience on occasion—that I also find most disabling. It is the vertigo that makes driving difficult, if not impossible. It is the vertigo that is hardest to hide from strangers and acquaintances. It is the vertigo that makes me appear unstable and irresponsible to others. Or, at least, that’s what I fear, which is why I recently found myself quietly holding tightly to the back of a white chair, red-faced and nervous, while surrounded by a group of empathetic patient advocates, many of whom live every day with the same condition I do.
Grateful for those who understand
That’s the thing about chronic diseases—they can be alienating. This is true even when we are in the midst of people with whom we should feel safe. Some symptom, whether it’s vertigo or something altogether different, makes us believe we’re being watched and judged and found faulty.
Thankfully, we have communities like this one to dispel those fears and remind us we are not alone. I am so grateful for that and for each and every one of you. Just as I am beyond grateful for the advocates in that room, whom I know—regardless of my embarrassment—would have embraced me completely, even had I let go of that chair and fallen flat on my face.
Maybe next time, I’ll remember that.