POTS Stole My Energy and Everything That Made Me, Me

As told to Jacquelyne Froeber

About 15 years ago, I got very sick. It started with strep throat. Then monkey. She was doing her best to get by as a busy mother with two young children, but then she hit the fever. For days I was out of commission, sweating and unable to cool down. When my fever went down, I felt very relieved. The worst was behind me and I couldn’t wait to feel better.

But it was as if gravity had seeped into my limbs and cast a spell on my muscles. Everything felt heavy and I was very weak and tired. Like I ran a marathon while having the flu. When I couldn’t muster the strength to put my children’s clothes in the washing machine, my husband took me back to the doctor’s office. “I’m not getting better,” I said, letting tears slide down my face. It took too much energy to erase them. But I was also angry. I was only 31 years old. I can lift a laundry basket. Something was wrong.

The provider diagnosed me with
Epstein Barr virus And I said there wasn’t much I could do except hopefully get through this. Best case scenario: I’d feel better in a few weeks.

But that wasn’t what happened. I spent the whole time in bed, exhausted from nothing, barely able to get up to go to the bathroom. It was like someone had taken away my vitality, my identity, and I was too tired to find it.

I’ve always been a go, go, go kind of person, so this new reality was torture. I could hear my kids laughing and running and playing. I could hear my husband setting the table with the dishes we’d just bought and the clink of glasses as he loaded the dishwasher. Every sound reminded me of the life I was missing. It triggered moments of energy. I would lift my head and try to get up, but my body wouldn’t do it. I started to turn on myself. Maybe I didn’t want it bad enough. Maybe I wasn’t trying hard enough. Then I would collapse into bed completely exhausted by my thoughts.

Weeks turned into years, and nothing improved. Some days, my muscles were so exhausted I had trouble breathing. I was depressed. Every bit of strength I had went into appointments with providers hoping to find something, anything, that might help me. But they all said the same thing: You’re anxious, you’re depressed, and you need to lose weight. I was on medication for anxiety and depression. I had lost weight, but my symptoms were the same. Plus, it was nearly impossible to exercise while feeling this way. The cycle continued.

On the days I did manage to get out into the world, I couldn’t spend more than a few minutes outside. I had developed an intolerance to heat, which was a big problem in Alabama. One minute I was fine, and the next I was short of breath, dizzy, and confused. I felt like I was suffocating and my body was like a torch. My face turned purple. Even when I turned on the air conditioning, it took a long time to cool down. The heat intolerance added another layer of torture. My depression worsened. I felt trapped in the house.

The hardest thing was not being there for my children. They were very young: my daughter was 3 and my son was 7 when I first got sick. I once took my daughter to a psychiatrist appointment and she looked at the doctor and said, “Please help my mom not be so tired.” That broke my heart into a million pieces. It wasn’t just me who felt helpless. We were all feeling it.

Alyson and her daughter in Alabama, 2011.

One day, my dad called and was really excited. He told me to get tested for lupus. “Maybe that’s what you have!” At one point, a dermatologist friend thought my dad might have lupus because of a butterfly-shaped rash on his face, and we have similar rashes, so maybe I had something like that.

I went to a rheumatologist a few days later and I didn’t have lupus, but my inflammatory markers were through the roof.

The provider thought I might have something called post-viral postural orthostatic tachycardia syndrome, or POTS. I wanted to scream. I had been searching for an answer for so long, and all this time I was just a simple test away. Still, I was happy to receive any information that could help me get my life back. To get a diagnosis of POTS, I underwent a tilt table test where I was literally strapped to a table and tilted upward. My blood pressure dropped and I passed out, which is the hallmark sign of POTS.

When I came to, I was elated. For too long I lived with this doubt about myself. Maybe it wasn’t just lazy, poor form and drama. The truth is that my nervous system was damaged by a viral infection (probably when I was diagnosed with mononucleosis) and the disorder was causing fatigue and overheating.

I was so excited I could barely get the word “treatment” out. I was ready to get started right away. I noticed the doctor didn’t seem as happy as I was. He told me that treatment options vary from person to person and have a lot to do with lifestyle. And there is no cure for postural orthostatic tachycardia syndrome. Basically, there was no pill or procedure that could bring me back to the cheerful, energetic Alyson I was before.

I started crying for my old self right there in the office. I had been holding on to the hope that once I was diagnosed I could feel like myself again. In a strange way, it was liberating to know that I could never go back to my old life. I had no choice but to move forward and make the changes that were best for me living with POTS.

First, that meant moving. We loved our life and our supportive friends in Alabama, but I couldn’t feel like a prisoner in my own home. We packed up and moved to Michigan, where the weather is cooler. I felt a difference almost immediately. I can walk our dog and watch my kids play sports outside. I went shopping at Target for the first time in a long time and didn’t take a nap afterward. I felt like I had won the lottery.

Alyson and her husband in snowy Michigan, 2023.

The freedom to move around without worrying about the heat has been a game-changer for my physical and mental health. I am much more active and also take a low-dose beta-blocker and a type 2 diabetes medication, which I believe has also helped with the symptoms of postural orthostatic tachycardia syndrome. However, I still have flare-ups and have to remind myself that I have a chronic illness and not to overexert myself.

Throughout this time, my husband has been my support. When I began to doubt if something was wrong with me, he dismissed those thoughts and encouraged me to move forward to find the truth. I have learned that it takes years for most women to receive a diagnosis of postural orthostatic tachycardia syndrome. My advice is to believe in yourself and remember that none of this is your fault. And ask for the tilt table test. Sometimes turning your world upside down is the best thing you can do.

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