LADN Ambassador & Actress Mara Wilson on Her POTS Diagnosis & The Power of Community

“Are you sure I have POTS?” I asked the nurse.

It was 2021, and I had just had a Tilt Table Test. It felt silly to ask, but after years of hearing “I don’t think there’s anything wrong with you,” or “Something’s wrong with you, but we don’t know what it is,” or “We know what’s wrong with you, but we can’t help you,” I needed to hear it.

“Yes,” he said. “You didn’t fully black out, but we saw what happened to your vitals on the machine.” Then he added, “Did you notice the doctor running over to check the data a few minutes in? She could tell something was wrong.”

I nodded. “But how could she tell?” 

“You stopped talking.”

He explained that it was common, quiet patients would start talking to themselves before they fainted, while chatty patients would suddenly get quiet. But I was mortified: all of my life, I’ve never been able to stop talking. It often gets me into trouble. My friends and family all laughed when I told them what he’d said: if there was one sure way to tell that I wasn’t my normal self, that I truly wasn’t feeling well, it was that for once, I had shut up.

Technically, the first time I fainted was when I was seventeen, twenty minutes after giving blood. Nobody thought that was strange: people faint at blood drives all the time. It may have been a hint, though, that maybe my blood volume was lower than average, or that something was off with my blood pressure. 

There had been signs before that: I’d noticed, as a child, that my legs felt strangely heavy every morning, like I’d just gotten over the flu. It made getting out of bed difficult, and once I got out of bed, I found I couldn’t make a fist. I’d also inherited my mother’s barometric pressure headaches, and my father’s migraines, both of which made me feel weak and foggy. And anything that sped up my heart rate made me feel seriously ill.

Then, in 2014, after a tea date with a good friend on a hot June day in New York, I developed a migraine unlike any I’d ever had before. I’m over-caffeinated. I’ll just go home, I thought, heading to the subway. Suddenly, all my limbs felt unbearably heavy. OK, I’ll just walk to a friend’s house. Rest there a while. 

I walked a bit more, and knew I wouldn’t be able to make it down the block. I’ll get a cab to his house, I thought, but there were none to be seen. My pulse was pounding. Everything seemed blurry and far away, and I couldn’t hear the city anymore.

I’m going to collapse, I realized. Do I ask for help, or do I just look for a soft place to land? Fortunately, I was able to do both: I flung my arm around a light post, and collapsed next to black garbage bags outside an outdoor cafe. 

I was lucky that a Physician Assistant had been eating at the cafe. She got me some water, and kept me company until an ambulance came. At the hospital, though, they didn’t know what to do with me: I was given IV fluids, but no real diagnostic tests, and was sent home. My doctor said it sounded like “atypical migraines” to him, so I stocked up on Aleve and tried to be more careful about getting dehydrated.

But that was not my last ER visit. For the next few years, whenever I was dehydrated or had a migraine, I was at risk of fainting. While it was frustrating, it was manageable. After a while, nearly all my friends had a “Mara fainting” story. (“Remember when we took Mara to the ER, and they said ‘We’re going left,’ while she was in the wheelchair, and she started singing Beyonce’s Irreplaceable?”)

Then came 2017. I caught what should have been a routine summer bug, and it destroyed my already-fragile autonomic nervous system. I hadn’t heard of “post-viral syndromes” before, but all I knew was I was exhausted all the time, weak, and in pain. My fainting spells came much more often, and this time, they were preceded by the worst feeling I’d ever felt. I’ve often described it as “Walking down a dark alleyway by yourself at night, after drinking a triple espresso, while on an edible. And you hear footsteps behind you.” 

I’d had panic attacks before, I knew what they felt like, and this was different. Friends and family didn’t understand why I was bursting into tears and collapsing after a chai latte or single glass of wine. Nor did any doctors I saw: the endocrinologists, rheumatologists, and cardiologists all said they didn’t know what was happening, or that they couldn’t help me. 

Ultimately, it was community that saved me. In 2018, I made a one-off joke about fainting after a migraine on social media, and was surprised by all the people who responded saying they had the same problem. 

“Do you have dysautonomia, too?” said one. “Join the POTS club! We have salty snacks!” said another.

Not long after, I tapped on a video from a YouTuber I liked, titled something along the lines of “My Biggest Secret? I’m Disabled.” She had a condition called Ehlers-Danlos Syndrome, she said, and she also had a condition called Postural Orthostatic Tachycardia Syndrome. POTS, I thought, and listened as she described having all of my symptoms. Despite feeling weak and exhausted, I was invigorated. 

I saw that she followed me on social media, and sent her a message asking about POTS. She sent me some wonderful resources: Dysautonomia International, POTS support groups, and all kinds of medical literature. I learned that dysautonomia was a syndrome that was comorbid with many other conditions I had, like endometriosis and migraines. I also learned that dysautonomia could develop from, or be made worse by viruses. And I learned many ways of coping with POTS and dysautonomia, from compression socks, electrolytes, to gentle exercises.

It was a relief unlike any I’d ever known. I was finally able to know what was wrong with me, and how to find help for it. It took a long time, but I was finally able to find a wonderful cardiologist, to get a Tilt Table Test, to be put on blood pressure medication, and to learn to live with POTS. 

Then, something surprising happened: people started reaching out to me to ask for help with dysautonomia! I knew I had to pay it forward, because I would not be able to stand here in my compression socks today without our community. 

It’s why I am happy to support the Los Angeles Dysautonomia Network: we need support, education, resources, and to spread the word. I’m so grateful for LADN, and the wonderful community those of us with dysautonomia have built, and I’m happy to spread the word. Once again, I’m not going to be able to stop talking!