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How POTS Made Me Feel Alone in a Crowd of 92,746

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One of the more frustrating aspects of all chronic illnesses is not knowing when a bad day will strike. But for me, it’s even worse not knowing which degree of “bad” the bad days will be. It’s like bad days come in coffee sizes; I might try to order tea, but life gives me a large coffee that day instead. Sometimes I wake up and feel off, and I don’t know just how poorly my body will handle activities that day until I start doing them. Will it be a small coffee, where I get everything done I need to just with added difficulty and pain? Will it be a large coffee, where I try to be productive but quickly realize I’m risking fainting every time I stand? Analogies aside, you can see how this unpredictability keeps me from being able to keep up a regular schedule.

However, I still try to go to events that I would have never missed before my postural orthostatic tachycardia syndrome (POTS) hit. Sometimes I can manage them successfully, like going to a concert as long as there is designated seating. Other times I fail miserably. This is the story of my worst outing to date, and how I felt utterly alone in a crowd of 92,746.

My husband and I are huge football fans, so when our college alma mater was playing an away game three hours from where we live, I begged him to go. He was hesitant. I hadn’t done anything so strenuous in literal months, but I knew if we planned appropriately I could make it.

Spoiler alert: I did not make it.

I did everything right. I got as much sleep as I could the night before. I took my medicines and vitamins. I ate healthy and protein-filled foods throughout the day. I drank my body weight in water. I rested until it was time to go to the game. I wore compression sleeves under my jeans. We took an Uber from the hotel to the edge of the stadium to limit walking. We walked slowly, taking lots of breaks, and made it to our seats with time to spare.

I got my hopes up. I was determined to prove I could do this, just attend a football game like I’ve done countless times before. Just a few years prior I could down mimosas at a tailgate then stand in the student section throughout the entire game in 100 degree heat, so surely, I could manage to sit there.

That’s the thing about POTS, though. It doesn’t care that you did everything you are supposed to do to manage it. A bad day will still hit you when it wants to. I was struggling all day, but I was praying it was a small coffee day, and I’d get through the game and just pay for it the next day. Sometime around the beginning of the second quarter I realized this wasn’t case. The September heat in the deep south is stifling, and even after sitting for a couple of hours my heart rate was through the roof. I was physically gasping for air, and it felt like one of the huge linebackers on the field hit me square in the chest, helmet first.

My mind was foggy, but I vividly remember sitting three levels up in this huge stadium and thinking, “There is no way I can walk out of here. If I try to stand I will faint. I am physically stranded.” I tried to convey this to my husband, but I wasn’t putting words together very well. Against every natural instinct I possess, tears were pouring down my face. There were over 90,000 people around me, but no one could fix this. Once again, POTS was winning. In that moment I felt utterly defeated by my illness. To everyone but my husband, I was another fan watching the game and my internal struggle was hidden from them.

When I fainted from a seated position, it then became pretty clear to our section that something was indeed wrong with me. I don’t remember the next few minutes, but I’ve been told I wasn’t regaining consciousness so eventually the stadium medical alert team came to me. They loaded me onto a chair device that let them navigate the stairs and took me out to an ambulance.

At this point I was in and out of it, but registered they were trying to take me to the hospital. I protested. There was nothing anyone could do for me, but they insisted it was stadium policy and I had to go. The EMT by the ambulance loudly said to a crowd of people, “Man alcohol is a hell of a thing,” as they transferred me to the stretcher. I couldn’t hold my head up, but I did manage to clap back with, “I’m sick, not drunk you a–hole.” My husband just put his head in his hands. He was already dealing with the most extreme fainting episode I’ve had, and now I was trying to fight a paramedic while strapped to a bed. Really, he’s a saint.

Several hours and a bag of fluids later, we left the local ER. This wasn’t the first time my symptoms sent me to the hospital. It wasn’t the first time I’ve fainted. It wasn’t the first time an IV was the only thing that lowered my heart rate. But it sticks out as the worst POTS day for two main reasons: it was extremely public, and it was the most helpless I’ve ever felt.

Sitting in the stadium while knowing none of the people crammed into this same space with me could fix my situation is really the perfect metaphor for chronic illness. I was in good company, there were people ready and willing to help. One guy even gave my husband his hotdog because he thought I just needed food. The people watching me being carried out were sympathetic and some offered words of encouragement. Yet, no one knew what was really wrong with me, nor could they do anything about it.

Needless to say, I haven’t tried anything as intense as an outdoor sporting event since. Our team ended up losing 31-3, but I may have had a worse time in that stadium than they did. Here’s hoping we’re both more successful next season.

Getty Image by salajean

Originally published: April 10, 2018
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