Above Photo:

My husband and me July 2022 at Kinzua Bridge State Park. We had just taken a (very steep) hike and I couldn’t figure out why I had almost passed out. I would be diagnosed with POTS one month later.

Three years later, camped out in my bed, where I spend most of my time. On a good day, these two goobers often join me. Hikes are a distant memory.

I Didn’t Know

3 years ago this month, I had my first episode of tachycardia.

Several months later, my doctor would say seven words that would completely change the course of my life: “I think you have something called POTS.”

POTS. Postural Orthostatic Tachycardia Syndrome.

It would take me a while to get the name down. It would take me even longer to understand just how vicious this disorder could be and how much it would disrupt my life.

At that time, I understood that POTS meant that when I stood up, my heart rate would elevate higher than normal. I understood that if I stood up for too long, I would get dizzy and lightheaded and need to sit down. I understood that if I didn’t sit down, I could pass out. I understood that this was dangerous.

I didn’t understand that POTS was a disorder of the autonomic nervous system. Dysautonomia, they call it. I didn’t understand that the autonomic nervous system controls every automatic function in your body. I didn’t understand how widespread this nervous system is, or all the bodily functions it encompasses.

I didn’t know that POTS would make me exhausted beyond words. The most tired I’ve ever been or could ever imagine being. Too tired to lift the spoon from the ice cream bowl to my mouth on the worst of days. When your heart rate jumps up to marathon pace in the two minutes it takes to walk to the bathroom, the exhaustion kind of makes sense.

I didn’t know that POTS could rob me of my cognitive functioning. That the blood pooling in my legs, which causes my heart rate to rise, meant that blood wasn’t getting to my upper body as quickly as it needed to, including my brain. I didn’t know that this would cause brain fog, forgetfulness, shortened attention span, and slow thinking. I didn’t know that cognitive dysfunction could make reading, writing, thinking, conversing, and even praying nearly impossible.

I didn’t realize that hormone release was an autonomic function. And when your autonomic nervous system is out of whack, so are your hormones. I didn’t know that when you produce too much of the hormone adrenaline, your entire body gets thrown off. Too much adrenaline can cause restless leg syndrome, midnight adrenaline surges that make it impossible to sleep, unreasonably high levels of anxiety, and panic attacks caused by being easily overstimulated. Too much adrenaline puts your body in constant fight-or-flight mode, prepped and ready for an attack that will never come. This makes it nearly impossible to be around people, especially little people who love to be loud. I didn’t know any of this when I was first diagnosed with POTS.

I didn’t know that most people have never heard of POTS, including many healthcare providers. I didn’t know that it is a newly recognized disorder, and because of this, there are few people in the country who have heard of it, even fewer people who have successfully treated it, and absolutely no one who understands it. I didn’t realize that getting the care I needed would be such a long, exhausting, uphill battle.

I didn’t know I would need to coach my children to say POTSSSS with an s and not “pot” with no “s” because “Mommy has pot” does not mean what they think it means.

I didn’t know until very recently that POTS commonly co-occurs with two related disabling conditions. A terrible trifecta. Over the three years since that very first episode of tachycardia in May 2022, I would be diagnosed with this terrible trifecta. POTS, MCAS (Mast Cell Activation Syndrome), and Hypermobility Spectrum Disorder, three chronic illnesses that, in unison, wreak havoc on a normally healthy body. A trifecta that reduces happy, healthy people to discouraged, struggling invalids hanging on for dear life.

I didn’t know any of this when this journey began. If I had known, I would have begged God to spare me.

But I’m so glad he didn’t.

What I Know Now

As baffling as my condition is, there are some things I do know. Things that I would not have learned any other way than walking straight through the refining fire that these three long years have been.

I know that a life lived in slow motion can be a very good life. My life has slowed way, way down since my diagnosis, far more than I wanted it to. But living a slow life has taught me the value of rest and the true meaning of productivity. I have limits. Significant ones. And going beyond those limits has immediate and severe consequences. I have had to dig deep into the stubborn recesses of my heart to dismantle the lie that my worth comes from how much I can accomplish in a day. And I have learned that taking care of my physical needs is an act of obedience no less important than volunteering at the latest church event. I have had to ruthlessly limit my activities, prioritize my physical needs, and carefully discern how best to use my time. But the reality is, everyone should be doing this, not just the chronically ill. We all have limits. We all need to say no a lot more than we do. We all need to be quick to reject busyness and prioritize rest. Being chronically ill has taught me these truths in no uncertain terms. And my life is all the better for it.

I know that my body was not created to bring me glory. Something happens to your heart when you struggle with body shame for your entire life, and then your body suddenly breaks. You’ve got some reckoning to do with yourself when you've believed the cultural lie that thinner is always better, and then you rapidly gain 90 pounds through no fault of your own. When you’ve tied your sense of self-worth to the function and appearance of your body for your entire life and then your body suddenly fails you, it’s time to ask some hard questions about what you believe. Gaining 90 pounds in less than three years could have sunk me deep into a pit of self-loathing and shame (and if I’m being honest, sometimes it does). But because God is gracious, and God has used my suffering for my good, gaining 90 pounds hasn’t enslaved me to shame; it’s freed me from it. I can no longer hope to meet the world’s unrealistic standards of beauty, so I must look elsewhere for my worth. Thankfully, God has fixed my eyes on him and the inherent worth he has given my body simply by creating it and calling it good. And he has taught me that my body was never created to bring me glory and honor anyway. It was created to bring him glory and honor. And I can do that no matter what size or condition my body is in. In God’s kingdom, thin isn’t the most beautiful; confident assurance in the inherent worth of my good body is.

I know that God’s faithfulness to me isn’t dependent on me. The Christian subculture would have me believe that the strength of my faith, even the status of my salvation, is directly linked to how often I read the Bible, how effective my prayers are, how positive my outlook is, and how joyful I am in the face of suffering. To fail in these endeavors demonstrates a lack of faith and a distrust of God. But I have not found this to be true (and neither does the Bible). When I couldn’t read my Bible or pray more than a desperate “help me”, when I was discouraged beyond words, and my weariness was past comprehension, my faith didn’t waver; it grew. It grew, not because of the strength of my grip on God, but because of the strength of God’s grip on me. I have learned that the status of my salvation and the steadfastness of my faith aren’t dependent on me and what I can contribute to them; they are dependent on God and his unwavering faithfulness to me. And through all these trials and tribulations, he has never once failed me.

And he will not fail me now.

Moving Forward

So what’s next for me?

I don’t know.

I’m grateful that my cognitive functioning has been mostly restored and my mental health has improved significantly. I’m grateful for the ability to read, write, and pray again and to teach on platforms like this because I’m not currently able to teach in person.

But I’m still significantly disabled by my illnesses. I rarely leave the house for anything other than doctor’s appointments. And when I do, it takes me days to recover from the extra energy I exerted to get there. I still have regular flare-ups of symptoms that keep me mostly bedbound. Housekeeping, meeting with friends, going to church, playing with my kids, and exercising are still impossible most days.

But I have seen small improvements over the last three years. And I’m continually reflecting on and actively recording the innumerable ways God has been gracious to me during this time. One day, I hope to write more extensively about it.

I’ve also started a new treatment specifically for MCAS that my doctor is hopeful will help significantly improve my symptoms. The treatment can take a long time to take full effect, but I am hopeful, too.

Until then, I will continue to use whatever faculties are still available to me to learn, to write, to teach, and to worship. I will continue to serve the Lord and experience the joy that comes from doing so, in whatever capacity my body allows.

Whether healing comes in this life or the next, I will continue, by God’s grace, to be strong, take courage, and wait for the Lord.

For I have found that, through it all, he really is worth waiting for.

I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! • Psalm 27:13-14