Being a chronically ill young adult is hard enough. Finding information about my fertility is even harder

I recently turned 25. I should be taking risks, jet-setting with other Barbies, and flouncing around in tiny tops. Instead, this chronically ill Barbie spent her first four days of 25 in a scene from “Oppenheimer.”

On my birthday, I spent nine hours convening with specialists three hours away from home. I contemplated my mortality as we decided which of my overlapping chronic health conditions is the worst so we can make the most of the final year I’m on my parents’ health insurance. The next day, my boyfriend and I of two years broke up. The following day, something else broke: my foot. How did I break it, you ask? Wouldn’t we all like to know. The day after that I enjoyed a hysteroscopy to investigate 90 days of unexplained vaginal bleeding. Turns out the inside of my uterus looked like a rotten tomato forced through a cheese grater.

Prior to turning 25 and my hysteroscopy, my mind was as far away from motherhood as Carrie Bradshaw’s is from a Birkenstock. However, as my doctor counseled me on my results, I heard it for the first time: the unmistakable tick of my biological clock and the accompanying chorus of questions: My uterus looks like what? Does that mean I can’t get pregnant? How would someone with my conditions even handle pregnancy? Should I freeze my eggs? How the hell do you even do that? Have any of the medications I’ve been on for years been quietly harming my fertility? This was not on my to-do list for 25.

Post-hysteroscopy, I lay in bed staring at the ceiling in pain with some American Girl doll character from the 18th century inside my uterus, churning butter the old-fashioned way. I curled up, a fresh estrogen patch folding on my stomach, turning toward another reality.

In the weeks prior, and at my request, my long-time team of specialists proposed three different biologics to potentially treat the root of my mystery autoimmune disease. (Biologics, for the uninitiated, are medications made up of living cells from plants, animals, or other organisms to mediate your immune system.) Now, only one question stuck on the back of my eyelids: Would these new medicines both give me a quality of life yet prevent me from ever making one?

Instead of sleeping, I applied my pre-first-date internet stalking skills to peer-reviewed health research. As a patient advocate, I pride myself on finding and discerning reliable resources. You can imagine my sweaty-underboob panic when I came up basically empty-handed.

I found hordes of information on how biologics affect cancer patients’ reproductive systems, and how biologics affect women wanting to conceive, or dames in their golden years. But the fact sheets admitted that there is very little information specifically about how biologics affect the reproductive systems and long-term fertility of young women and girls ages 13-25.

For example, buried in the 2023 atlas-sized package insert for Benlysta, or belimumab, is just one meager line that address fertility: “Effects on male and female fertility have not been directly evaluated in animal studies.”

Effects of Benlysta in pregnancy got a bit more of a highlight, saying that (as is often the case) it has not been the subject of human randomized control trials. So it has been studied only in pregnant monkeys or in pregnant people who, after making a risk-benefit evaluation, decide to stay on Benlysta and offer up themselves to be studied through organizations like MothertoBaby. All in all, I found it comforting to know that if I decided to grow a zoo animal inside me at least I’d have data!

Perhaps worst of all, in an experience I’ve gone through many times as part of my chronic illness journey, most of the articles I wanted to read were behind paywalls, mocking me. This left me with the same anxious pang as dating an avoidantly attached man: shut out.

I figured my many doctors would at least have some knowledge of how biologics affect fertility in women my age who want to be pregnant in the future. Some of those I asked were candid about their lack of knowledge and referred me to an expert. Others weren’t so helpful, like this one male doctor with the personality of a celery stalk who said to me, “Oh, I didn’t know you wanted to have kids. Yeah, this medication would permanently harm your fertility.”

So I reached out to the people most likely to have answers: female experts in the field.

Cuoghi Edens (a rheumatologist at the University of Chicago), Anna Reinert (a minimally invasive gynecologic surgeon at the University of Southern California), and Chelsey Forbess Smith (a rheumatologist at the University of California, San Diego) are three of the few reproductive health intersection experts in the U.S.

Each swiftly inducted me into the realities of their field: 80% of diagnosed autoimmune patients are women. Tracking their fertility is complicated because, of course, their patients with uteruses are in different reproductive stages. Pregnant patients are largely excluded from clinical trials. Adolescents on biologics moving to adult care get lost in transition. Research on biologics’ impact on adolescent girls is hindered by consent issues for minors, despite the CDC finding that more than half of all young people have at least one chronic health condition, and that number continues to grow.

I spoke with each expert separately, focused on one question: Could I get pregnant, or be fertile enough to conceive naturally, on any of the three proposed biologics?

To my incredible relief, all three experts said yes. Their recommendations come from an amalgamation of years of expertise and studying the little available research this area, and a personal commitment to find patients information.

Reinert actually said, “Disease control is the primary objective when considering fertility.” Forbess Smith concurred, adding: “The risks of the medications we use are known and are very minimal in comparison to untreated disease.” They also reminded me I’m a complex patient who’ll still need careful planning with a doctor, like a high-risk pregnancy doctor.

Their assurance made me realize I was harboring some dangerous beliefs about pregnancy and medication use. Call it the pungent aroma of GOOP’s vagina-scented candle wafting across social media, but at some point I started assuming that the only way to have a baby safely with my health conditions is to go full crunchy-granola and come off all of my many, many medications.

And I’m not alone. Forbess Smith told me she’s heard this fear from many “women [who] often fear ingesting anything other than a prenatal vitamin in pregnancy.”

Each expert individually expressed exhaustion with how misinformation is rampant given reproductive health fads.

But they also told me that my research into fertility and biologics was pretty thorough given the little out there. Edens was honest: “No one knows” exactly what these medications might do to fertility, even if they are optimistic.

I have to acknowledge something: I was really lucky to be having these conversations with experts. I was largely able to access them because I told them I was writing a piece about this topic for STAT.

Where does that leave the millions of women in U.S. health care deserts? Adolescents with distant rheumatologists? Black mothers facing alarming mortality rates? Who advocates for them? I realized this isn’t just a research gap issue — it’s political one, too.

Women’s health has a longstanding tradition of not being taken seriously. Taking it seriously means striking a balance between not reducing women to their fertile age, while also raising topics of contraception, fertility, illness and pregnancy in a nonjudgmental way. It’s a tall order, and these women are certainly up for the challenge.

Edens is preparing for a research project on adolescents with lupus, and Forbess Smith just launched UCSD’s Lupus Center, featuring a dedicated reproductive health clinic. I’m a part of the Young Patients’ Autoimmune Research and Empowerment Alliance, which is working to provide relevant research to young patients like me.

As for me, it remains true: The last thing I want to do is pop out a slimy, bald-headed mini-me in the near future. Maybe I’ll just forgo the whole pregnancy thing and adopt.

But the important thing is that I’m now better equipped to make decisions. For now, this Barbie will take comfort in knowing there are scientists, doctors, and advocates working to paint the town pink. They’re making sure that one day, if I want to grow a monster inside me, I’m informed and can therefore exercise my human right — choice.

Catherine Ames is author of “Chronically Catherine,” a “Sex and the City”-inspired column about life as a young person coexisting with chronic illness, without losing sight of fabulosity.