Too Much: Notes on Sensory Overwhelm (part 1)

Last weekend, I attended afternoon tea. One of my girlfriends made a reservation at a fancy-pants tea shop in Old Town Alexandria for six of us a few months back. I was determined to go despite… well, everything. 

For two days leading up to this event, I rested as much as possible. I also cleared the schedule for two days after for recovery. It was going to be taxing but totally worth it. Right?

I’m writing this a week out and my body still hasn’t recovered. Even with my partner generously driving me the 30 minutes there so I could recline in the passenger seat (and wandering the nearby Torpedo Factory art studios for two hours so he could drive me home, bless him), it was all too much. 

The tea shop was tiny. Too many tables filled a high-ceilinged room made of glass and polished pink tile. At any other time in my life, it would have been easy to tune out the clatter and enjoy the tower of fancy scones and cute pots of jasmine tea. Nope. By the end my body was so stressed I feared I would burst a blood vessel if anyone so much as asked me a question. My teeth hurt from clenching my jaw. 

I have never been the most easygoing of humans. My parents tell stories of me sobbing at our town’s dinky 4th of July Fireworks display, begging to go home. I get snappish if too much is coming at me at once. So while I’m no stranger to sensory issues, this new hypersensitivity to noise, light, and touch is next level. It is as if my entire body is a raw nerve. Even the slightest uptick in stimulation and I feel like screaming.

While sensory overload is not the most common symptom of Long COVID, it shows up often among those of us with the fatigue subtype of the illness. And it is one of the most prevalent complaints of people with ME/CFS.

Like many symptoms of illnesses that attack multiple systems of the body, there is not one clear cause for hypersensitivity. In fact, there may be several things going on at once. Inflammation or infection can create dysfunction in the cerebellum or frontal lobe. Or there may be issues with the sympathetic nervous system which manages the fight-flight-freeze response. Because the nervous system can’t differentiate between safe and threatening stimuli, overstimulation triggers the emergency response stress response. Adrenaline and cortisol flood the system even when, by every rational measure, we’re safe.  

No matter the cause, the central theme is dysfunction. The feeling of overwhelm is sudden and comes with intense physiological and psychological pain. The reaction is completely out of sync with what is actually taking place around me, yet it feels totally real. When it happens, I want to either lash out or curl into a ball and cry. Better yet, escape. It’s like being a toddler melting down at my own birthday party. Even though I was the one who asked to have everyone over, it’s all just Too Much.

Receiving more sensory information than the body and brain can sort demands a level of cognitive exertion that can trigger even greater fatigue. When we’re well, the idea that a few clinking teacups might wear us out is absurd. But PEM (post-exertional malaise) has a dark sense of humor. It can turn a puff of air against our skin into a weeklong crash.

There are so many places I used to move through comfortably that are now Too Much. Movie theaters, farmer’s markets, trivia night at the sports bar. Most restaurants. Sporting events. Parties with more than about 6 guests, or where music is playing. Concerts, even outdoors at the park. Shopping malls. Church. Trader Joe’s (the worst!) 

This sensory overwhelm is not just out there in the world. It happens in my own home on an almost daily basis no matter how much I try to control the environment. If a movie is on and someone gets a phone call, sprays cleaning solution, or starts running a leaf blower, the combination of stimuli can hit me like a punch to the head. It physically hurts. Even the sound of the dishwasher can do me in. 

It is as if I am a pot of water full to the brim simmering on a stove. All day every day, I’m at capacity and about to boil. Because I’m trying so hard to keep from sloshing and burning the people around me, I’m constantly tense, cautious, saying no. Careful not to add anything. Which means an incredibly controlled and narrow life. 

The problem is, being free of overstimulation is not free. Living so tightly contained exacts a price. Sometimes that price is just too high.

In my next post, I’ll describe some of my attempts to mitigate sensory overwhelm while still getting out at least a little bit into the world. Figuring out what works is both an ongoing project and a moving target. The ME/CFS and SPD (sensory processing disorder) communities have been a lifeline through this. Their stories not only offer tools for functioning, they provide a sense of solidarity when stumbling through a world that is, on most days and in most ways, Too Much.