When Selena Gomez recently told Vanity Fair that she’s unable to carry children, it hit home. In particular, it brought back a gnawing resonance of “what might never be” when she said, “I unfortunately can’t carry my own children. I have a lot of medical issues (lupus) that would put my life and the baby’s in jeopardy. That was something I had to grieve for a while.”
When I was 20, I experienced one of the worst weeks of my life. What was meant to be a routine STI check-up – something I do often, regardless of my relationship status – turned into a nightmare. I was initially told I had syphilis, and days later, they suggested it could actually be HIV. My world crumbled for about 72 hours. I had only been in two sexual relationships at that point. Thankfully, it turned out to be a false positive but an impromptu diagnosis.
After visiting three hospitals and the lupus specialty clinic at Bellevue Hospital, I was eventually diagnosed with an autoimmune disease called antiphospholipid syndrome (APS). APS, also known as “sticky blood,” is an autoimmune disorder where the immune system mistakenly creates antibodies that increase the risk of blood clots in veins, arteries, and organs. People with APS are often at risk of developing other autoimmune conditions, like lupus.
As a condition that disproportionately affects women, it’s unfortunately no surprise that research and funding for APS in the US is relatively limited. Even in a prosperous state like New York, where I was born and raised, there are only 38 providers who treat patients with APS. However, even the APS Foundation of America’s website states, ‘The doctors on this list may not be “experts” in APS, but someone along the way has had luck with them.’ So when it comes to this condition, nothing is ever promising. That’s a reality I still face when explaining to any medical professional what my condition is, only to watch them Google it in real time because of how rarely it’s discussed on a wide medical scale.
At the time, I was one of the youngest to be diagnosed at the clinic. For the following few years, I spent every six months in and out of the rheumatology department. Each visit started the same way: “You’re young, but in case you’re considering family planning, you should know that, unfortunately, it won’t be an easy pregnancy and could be life-threatening.” No one ever explicitly told me I couldn’t have a child, but the insistent warnings forced me to consider a future without bearing a child. The risks included an increased chance of miscarriages, stillbirths, and preterm births due to blood clots restricting the placenta. I also face a lifetime of blood tests with false positive results and a higher risk of strokes, deep vein thrombosis, or heart attacks due to clotting problems – things none of my peers were facing as we barely stepped into young adulthood.
As a kid, my mother never taught me to fear becoming a parent. Instead, she emphasized the importance of considering the implications of making life-altering decisions, like having a child. As she’d say, “Para las mujeres dando luz es un momento entre la vida y la muerte” – childbirth is a moment in a woman’s life when she’s between life and death. One foot on both sides of the border of life and the beyond, bringing in the new but at the risk of her own life for the love of her child. Her words echoed loudly in my mind every time the doctors left me in the room to discuss my blood test results. The thought, “Wait, do I want kids so much that I would risk my life for it?” was something I only allowed myself to consider during my visits to the clinic.
For the last decade, whenever the subject has come up with partners or friends whose clocks had started ticking, I’d exclaim, “I don’t want kids because I can’t have kids.” In situations where I felt like explaining my reasons, most women compassionately understood the severity of my circumstance, but men often questioned with comments like, “They never said you can’t have kids, you just have to be willing.” Call me selfish, but I don’t know if I’m willing to sacrifice my life for a child only to leave them motherless. Unfortunately, unless a partner and I someday want a biological child, surrogacy seems like a realistic option only in the most affluent circumstances – something I’ve seen among celebrities like Adrienne Bailon and the Kardashians.
Truthfully, at 36 years old and after over a decade of telling myself and others that I don’t want children, I know deep down it’s not truly a matter of want – it’s one of fear. As Selena Gomez said, “I thought it would happen the way it happens for everyone.” I’ve also had to grieve the idea of what was “supposed to happen.”
I’ve also had to grieve the idea of what was “supposed to happen.”
Gomez did say, “I find it a blessing that there are wonderful people willing to do surrogacy or adoption, which are both huge possibilities for me.” But my reproductive years are filled with constant grief and “what ifs.” Gomez’s “huge possibility” of surrogacy resources isn’t one afforded to me at this time, and that’s something I wonder if I’ll ever make peace with. It’s untrue to say that I’ve fully grieved my situation. Most days, I love the idea of being the “aunt” who can give a little more because she’s childless. It’s not truly a matter of I don’t want children. It’s the high chances of multiple miscarriages and, worse, stillbirths, along with the mental health effects they will leave behind on me and any potential partner, that has caused me to embrace the reality of what a childless life could potentially afford me.
At times, the hardest part is living with the reality that it feels like my autoimmune disorder made the decision for me. That’s probably one of the greatest struggles I face after 26 years – not having a simple option. Maybe I’ll struggle with the “what ifs” until the day menopause comes knocking and my fertility window has truly closed.
Katherine G. Mendoza is a seasoned Ecuadorian American writer and producer, boasting more than a decade of expertise in social-first storytelling. Her work has graced the pages and screens of renowned publications and media outlets including PS, The New York Times, Entertainment Weekly, Variety, Univision, Telemundo, Huffington Post, and Uproxx.
