How Dysautonomia Affects My Daily Social Interactions


I am an extrovert. One of my absolute favorite things is having spontaneous conversations with people in the hallway or the parking lot or when I run into them while picking out avocados in the grocery store. You never know what you might learn about someone or get to share about yourself in those moments when you both run into each other and decide to start talking.

But because I have dysautonomia (specifically postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia caused by Ehlers-Danlos syndrome), these types of spur-of-the-moment conversations, which often occur while standing, are also one of my worst fears.

Let me explain what happens while I’m standing somewhere having a conversation:

About two minutes in, I’ll start to get uncomfortable.

blood pressure monitor

Within the next minute, uncomfortable will very quickly become unbearable. My heart rate will get high enough to make me think I’m running a marathon. I’ll get dizzy and lightheaded and nauseous all at once. I will get excruciatingly hot and start to sweat. I’ll probably also turn bright red. I will be able to feel each heartbeat in every single inch of my body so intensely I’ll think it’s actually visible. My heart won’t be able to keep up with gravity, and blood will pool in my feet. They’ll start to tingle and go numb and turn a little purple inside of my shoes. The muscles in my neck and shoulders will tense in an attempt to push blood back up toward my head. They will tense so much that pain will radiate from my clenched jaw to the base of my skull and all the way down my arms and back. And I will start to anticipate that these muscles will hurt more than usual for the next several hours because of how hard they are working right now. My ears will start to buzz and fade in and out like a radio station losing signal. And I will think about how if I could just sit down and have my water bottle and my fan, this would all go away and I could actually enjoy this conversation, in which I want so badly to be fully present. And then I will disconnect and start to panic about how I want so badly to escape, but also so badly to stay.

I’m often left with three choices:

1. Leave the conversation so I can sit down and relieve the madness happening inside my body.

2. Interrupt the conversation in an attempt to move locations so I can sit, and probably end it that way (“Oh, it’s fine, go sit…we can catch up more later!”). This requires a lot of explaining that takes away from the conversation and usually deters it.

3. Continue to stand there in agony, mostly disconnected from the conversation but pretending to be present while trying to hide the sweat on my forehead and the shifting of my feet and the lack of emotional response to anything the other person is saying. And regret it later when I know I pushed it too far.

This might seem trivial. But missing out on one conversation, whether it was 30 seconds or an hour long, means missing out on a shared moment, a potential friendship, the opportunity for human connection. And in a world where chronic illness already makes us feel so isolated, that is a big deal.

We want to hear your story. Become a Mighty contributor here.

Leadphoto via Thinkstock.

TOPICS
JOIN THE CONVERSATION

Related to Dysautonomia

three women sitting on a bench

Why People With Chronic Illness Need Quality of Friends Over Quantity

I was diagnosed with dysautonomia and chronic pain in January of 2017. But my journey with chronic illness began long before I knew what to call it. As if everyone’s freshman year of high school isn’t full of stress and anxiety, the first month of mine was met with overwhelming lightheadedness, debilitating nausea, blurred vision, [...]
Doctor Talking To Unhappy Teenage Patient In Exam Room

3 Effects of Being Chronically Disbelieved About My Illness

Sometimes I wonder if doctors have a list of diagnoses they give “difficult” people just to pacify them; just to quiet those people who insist they don’t feel well even though their tests come back fine. It’s ridiculous to think this, I know. But after six years of being disbelieved about the symptoms I’ve lived with every day, [...]
woman's eyes

What I Can and Cannot Control as a Mom With Chronic Illness

Living with multiple disabling conditions teaches you a lot about life, like how to recognize what you can and cannot control. I cannot control when or where I will or will not have a flare. I can control how I prepare for the flares that happen. I can also make a conscious and concerted effort [...]
bracelet that says 'live'

Why I Don't Make New Year's Resolutions as a Person With Dysautonomia

I stopped making New Year’s resolutions years ago. The reason is not because I failed at them or did not need to change behaviors. On the contrary, I believe I need to work daily on improvements. Each new day provides opportunity. I love how even if I have a rough day, I can go to sleep [...]