I was born with a rare genetic disorder, passed from my father. He was not aware his collection of symptoms had a name, and was diagnosed the same day as I. This diagnosis has caused me joint issues that include chronic pain, multiple surgeries, and physical therapy; major depressive disorder; vision problems; scoliosis; and kidney malfunction.
Kidney failure, glaucoma, and loss of mobility may be in my future.
A study was published showing an alarmingly high rate of preeclampsia in people with my disorder who try to carry a pregnancy. My partner and I had already been debating the ethics of bringing a child into the world who had a 50% chance of inheriting my disorder. Once we learned that my life could be at risk during a pregnancy, we decided to not have biological children. Since this decision was made in our mid-20s, we’ve searched for surgeons who would offer us permanent sterilization but keep being told we were too young. We might change our minds, we might regret it, et cetera.
Even as we explained that this wasn’t about a preference, and that changing our minds would literally put my life at risk, we were still pushed to go the route of hormonal birth control. As if those don’t have any side effects that a person may want to avoid. And even if I was able and willing to choose a LARC (long acting reversible contraceptive like an IUD or implant), it feels incredibly invalidating and patronizing to request what you know is right for your family and body, and be pushed toward options you’ve tried before, read about incessantly, and have ruled out. And, I knew the finality of not being able to get pregnant would be healing for me. I needed to know it wasn’t possible so I could move on. It is incredibly difficult to accept my physical limitations that come with my disorder, and this would help me to refocus, and living without the fear of becoming pregnant would be such a weight lifted.
I’m a sex educator and reproductive health advocate so I’m very responsible using contraceptive methods. I know how they work best and I follow those practices. But because the most effective reversible options gave me such horrible side effects, I was left to rely on less effective barrier methods while I searched for a doctor to perform a sterilization. I have personally needed to know that access to termination was available in case I fell in the small failure rate for my method of contraception.
A pregnancy could literally kill me, and any child I carry may be born to suffer my same disorder. I can’t do that to someone else. I have the power to stop this strain of it in my family tree, and I feel that is the most humane and responsible thing to do. If my health were to be compromised during a pregnancy, all of those who rely on me would suffer, too. My family, my friends, my clients. We know that the majority of women who choose abortion already have children. They are choosing termination so that they may better provide for their families. For me, it will keep me alive and healthy for those who depend on me.
Just a few weeks ago, I finally found a provider who listened to me, and approved me for a salpingectomy (removal of the fallopian tubes). She was kind and listened to my decade-in-the-making story of seeking the most appropriate contraceptive for my family. After she heard my story, she gave me the different surgical options. She also urged me to do it sooner rather than later, given the current threats to the Affordable Care Act. When I realized she was willing to do this procedure, and was not going to lecture me in a condescending way about regret and changed minds, I sobbed. I am counting the days to my procedure. Being able to design the family we want, that we are prepared to care for, and that feels the most ethical to us, is finally within our reach.
