as told to Jacquelyne Froeber
About 15 years ago, I became seriously ill. It started with strep throat. Then, mononucleosis. I did my best to get by as a busy mother of two young children, but then the fever hit. For days I was out of action, lying on the floor sweating and unable to cool down. When the fever went down, I felt very relieved. The worst was already over and I couldn’t wait to feel better.
But it was like gravity had crept into my limbs and cast a spell on my muscles. Everything felt heavy, and I was so weak and tired. Like I’d run a marathon with the flu. When I couldn’t muster the strength to put my kids’ clothes in the washer, my husband drove me back to the doctor’s office. “I’m not getting better,” I said, letting the tears slide down my face. It took too much energy to wipe them away. But I was also angry. I was only 31. I can lift a laundry basket. Something was wrong.
The provider diagnosed me
Epstein Barr virus and I said there wasn’t much I could do except hopefully I’d get through this. Best case scenario: I would feel better in a few weeks.
But that’s not what happened. I spent all my time in bed, exhausted from nothingness, barely able to get up to go to the bathroom. It was like someone had taken my vitality (my identity) from me and I was too tired to find it.
I’ve always been a person who is always on the go, so this new reality was torture. I could hear my children laughing, running and playing. I could hear my husband setting the table with the dishes we had just bought and the clinking of glasses as he loaded the dishwasher. Every sound reminded me of the life I was missing. It gave me moments of energy. He raised his head and tried to get me up, but my body wouldn’t. I started to turn against myself. Maybe I didn’t want it enough. Maybe I wasn’t trying hard enough. Then I would collapse back into bed, completely exhausted by my thoughts.
The weeks turned into years and nothing was getting better. Some days, my muscles were so exhausted that I had trouble breathing. I was depressed. All my strength was devoted to doctor’s appointments in the hopes of finding something, anything, that could help me. But everyone told me the same thing: you’re anxious, you’re depressed and you need to lose weight. I was taking medication for anxiety and depression. I had lost weight, but my symptoms were the same. Plus, it was almost impossible to exercise while feeling like this. The cycle continued.
On the days that I managed to go out into the world, I couldn’t spend more than a few minutes outside. She had developed a heat intolerance, which was a big problem in Alabama. I was fine one minute and then short of breath, dizzy and confused the next. I felt like I was suffocating and my core was a torch. My face turned purple. Even when I stepped into the air conditioning, it took a long time to lower my body temperature. Heat intolerance added another layer of torture. My depression got worse. I felt trapped in the house.
The hardest thing was not being with my children. They were very young – my daughter was 3 and my son was 7 when I first got sick. One time, I took my daughter with me to a psychiatrist appointment and she looked at the doctor and said, “Please help my mommy not be so tired.” That broke my heart into a million pieces. It wasn’t just me who felt helpless. We all did.
Alyson and her daughter in Alabama, 2011.
One day, my father called me and was very excited. He told me to get tested for lupus. “Maybe that’s what’s wrong with you!” At one point, a dermatologist friend had thought my dad might have lupus because of a butterfly-shaped rash on his face, and we get 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 off the charts.
The doctor 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 a long time, and all this time, I was only left with one simple test to find it. Still, I was happy to receive any information that could help me get my life back. To get a diagnosis of POTS, I was given 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 regained consciousness, I felt ecstatic. For too long I lived with that doubt about myself. Maybe I wasn’t just lazy, out of shape and dramatic. The truth was that my nervous system was damaged by a viral infection (probably when I was diagnosed with mononucleosis) and the disorder was causing the fatigue and overheating.
I was so excited I could barely pronounce the word “treatment.” She was ready to start right away. I noticed that 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 return me to the happy, energetic Alyson I was before.
I began to regret my old self right there in the office. I had been holding on to the hope that once I was diagnosed, I would be able to feel like myself again. In some 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 postural orthostatic tachycardia syndrome.
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 outdoor sports. I went shopping at Target for the first time in a long time and didn’t take a nap afterwards. 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 all of this, my husband has been my support. When I began to doubt whether there was really something wrong with me, he quelled those thoughts and encouraged me to continue searching for the truth. I have learned that it takes most women years to get a POTS diagnosis. My advice is to believe in yourself and remember that none of this is your fault. And ask about the tilt table test. Sometimes turning your world upside down is the best thing you can do.
Do you have any real women, real stories of your own that you’d like to share? let us know.
Our Real Women, Real Stories are authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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