I was one of those kids growing up who wasn’t sure what they wanted out of life. With my parents splitting up when I was young and constantly fighting through the courts, having to change schools and living in poverty, I was a pretty confused child.
Even back as far as elementary school, friends of mine discussed their dreams of being married by 25, having three kids and working at the same school we attended. I was envious of them. They sounded so sure of themselves, so normal, and in my heart, I knew that didn’t sound like me at all. I didn’t know if I ever wanted to get married or have children. As it turns out, the chance of me having my own biological kids is slim.
After high school, I went away to pursue my degree in creative writing. My life at college was vastly different than my life back home. For the first time in my life, I felt like I actually had some control over my life — that I had choices. I had just settled in when I began getting bizarre symptoms. Dizziness all the time for no reasons, strange pain or numbness in my limbs, awful stomachaches and headaches. Then I began passing out.
Several trips to the emergency room prompted a referral to a cardiologist, who put me through a dozen tests. Doctors discovered that I have something called dysautonomia, which is a form of autonomic dysfunction. Years later, new doctors found that I have a specific form of dysautonomia called postural orthostatic tachycardia syndrome. POTS, essentially, is orthostatic intolerance that, according to the Cleveland Clinic, is a disruption in the “balancing act of blood vessel squeeze and heart rate response” when a person goes from a sitting to a standing position. Many people who have POTS, myself included, experience awful symptoms from the disorder even when they aren’t standing up.
After I was diagnosed, I was put on several new medications to try to curb the symptoms that were getting in the way of my everyday life. I tried a bunch of different meds that either didn’t work at all or helped very little. I still felt terrible all the time and was fainting daily.
Early into my diagnosis, my doctor told me that being pregnant with POTS is exceptionally hard on the body. Some women feel their symptoms get better with pregnancy, but based on my history, my doctor was confident I would be one of the ones who felt worse and would have my symptoms increase because I was already so symptomatic. Some of the meds I was on — ones that actually seemed to help a little — I’d have to wean off of while pregnant, increasing my risk of symptoms and fainting.
Dr. Svetlana Blitshteyn, director of the Dysautonomia Clinic at Amherst Neurology, says that a single fainting episode probably won’t cause harm, but multiple episodes require intervention because of the damage it can do. POTS is also associated with having a higher rate of miscarriage than the average pregnancy, and I was told my odds of having a miscarriage due to fainting and landing on or hitting my stomach were far higher than the average pregnant person.
I was only 19 when I found all this out and didn’t know how I felt about any of it. Having a chronic illness, the first of many I would discover, was enough to think about. I didn’t even want to attempt to process potential pregnancy as well.
Then I started having seizures. To this day, after every test my doctor can think of performing, we still don’t know why I get them or what causes them. It’s possible one of the times I hit my head after fainting hurt my brain somehow or that one of the many medications I was on disagreed with my body, but we don’t know for sure. I’m kept stable by medications that could cause birth defects and, according to the Epilepsy Foundation, having seizures during pregnancy increases the risk of premature labor and miscarriages while lowering the fetal heart rate.
I know that having POTS and getting seizures doesn’t mean I can’t have a perfectly normal pregnancy and deliver a perfectly healthy baby. It’s definitely possible. I’ve thought extensively about what that means for me, my body and my health and know that pregnancy isn’t for me. There’s just too much risk involved for me to feel comfortable with it. My father lost a child that died due to complications, and I’ve grown up seeing what that loss does to a person. I don’t know if I could survive it.
I’m perfectly happy living my life child-free. Chronic illness already involves a ton of care and consideration and time that I don’t have to devote to someone else. I respect people who, if they were in my situation, would still choose to have kids because that is a big responsibility and a lot to deal with. At this point in my life, I feel more comfortable child-free and, if I change my mind, I know there are many children out there looking for a home. Chronic illness made my decision not to have kids for me, but at least I’m not confused anymore.