Pregnancy can be a time of hope and excitement; it can also be fraught with fear, doubt, and complex decision-making. For women with chronic illness, it may be all of these things — and more.

Instead of offering support, evidence, and knowledge for pregnant women, the comments regarding acetaminophen (Tylenol) from the US Food and Drug Administration (FDA) and others are nothing short of confusing. This situation affects women with chronic illness disproportionately because it perpetuates the stigma around taking safe and necessary medications during pregnancy.

Understanding the FDA’s Acetaminophen Guidance

This heading is not quite accurate, because there’s no such thing as “understanding advice” that lacks a basis in evidence-based medicine.

The FDA issued a letter that suggested a possible link between acetaminophen and increased risk of neurological conditions (like autism and ADHD) in children. However, the same letter also says that a causal relationship has not been established. It’s not a cohesive message; it sounds like something decided on vibes, with no actual evidence to back it up.

The letter goes on to recommend using acetaminophen sparingly for low-grade fevers in pregnancy. But then it says that acetaminophen is the safest over-the-counter pain and fever medication during pregnancy.

If acetaminophen is the safest, but you’re telling women not to take it, that actually leaves them with nothing. It doesn’t offer any practical advice, such as a recommended lowest dose. The FDA gave the equivalent of a shrug, which is distressing from the agency that approves medications and medical devices.

The statement erodes trust in the body’s ability to support the American people, which is why it exists. It doesn’t (or it’s not supposed to) serve the president, the head of any other agency, or pharmaceutical companies. The FDA should serve the American people, first and foremost.

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The Realities of Medication Decisions During Pregnancy

On Episode 188 of “About IBD,” Mariah Leach, founder of Mamas Facing Forward, and I talk about our pregnancies and how we thought about making decisions around medication.

Mariah went the gamut between no medications for her rheumatoid arthritis during her first pregnancy, to receiving the medications she and the baby needed during her third pregnancy. I experienced acute problems, including urinary tract infections, during my pregnancies, for which I took medication.

The decisions that we made around medications during our pregnancies were personal to us, and we considered them carefully.

An example that I didn’t give during the episode was how older women scrutinized everything that I put in my mouth when I was pregnant. They had nothing to say before they knew I was pregnant (even when I actually was), but plenty of opinions once they knew.

I don’t blame them. They thought they were helping me. But at 34 years old with my first pregnancy, I was a whole ass adult, I had been a medical writer for several years, and I was consulting my medical team about everything I did. The women acquaintances who were watching me like hawks were falling prey to the idea that any medications during pregnancy were bad for the baby.

It didn’t matter that I, the mom, was suffering through symptoms. That I was managing a pregnancy post-colectomy surgery, and with mystery symptoms. That some of my physicians were literally among the most renowned in their field. This pervasive cultural ideal of taking no medications during pregnancy was so deeply ingrained in people’s minds that they felt entitled to give me unsolicited advice.

The FDA letter and the “advice” around it feed the outdated, almost superstitious, societal ideal of the unmedicated pregnancy and that moms are the cause of any perceived differences or disabilities in their children.

Celebrating Human Diversity

Society wants to fix disability. It doesn’t matter to society what actual disabled people want. Human diversity isn’t celebrated and accommodated; it’s pathologized.

There are people with IBD who would take a pill to make it all go away. There are people with IBD who wouldn’t take a pill to make it all go away. Both views are valid and should be respected.

But society doesn’t want differences. It wants the same. It wants people to be as compliant and come with as little mess as possible. Never mind that humans are inherently and spectacularly messy in all of the ways.

This extends to the neurodiverse community. Neurospicy people may or may not identify as disabled. That’s up to them. But having a brain that works in a unique way isn’t automatically a disability or even a problem. It is society that has the problem.

When we try to “fix” something that is part of human diversity, we are trying to destroy the beautiful uncertainty that defines us. How absolutely boring would our lives be without all of the spectacular differences we see across humanity?

I’m not even entirely convinced that there is such a thing as “neurotypical.” Aren’t we all glorious, rich tapestries with unique ways of thinking, learning, and expressing ourselves? Why do we pathologize some brains but not others?

Because of convenience. For society, a child who doesn’t sit quietly in a chair all day and learn the way we want them to is inconvenient and takes resources. Instead of celebrating and accommodating, we are forcing kids to comply.

Because it’s “easier.”

This all comes back around to looking for a “reason” for autism. For blaming everything under the sun, without evidence, and causing moms so much pain and frustration as they wonder endlessly what they “did wrong.” Acetaminophen is just the next thing on the list of pointing fingers and trying to solve something that’s probably not solvable, because it is part of the spectrum of the human condition.

Practical Tips for Managing Chronic Illness During Pregnancy

Nothing I say or write could take away all the worries that pregnant women have. Even when medications are shown to be safe, pregnant women are probably still going to worry about taking them.

What can be done is to have a plan in place that supports women and their babies. Stress doesn’t help, and no matter how a woman feels about her pregnancy, she deserves to have the resources that she needs.

Here are some tips for women with chronic illness to consider before attempting a pregnancy:

Bring in your doctors. They will want to know if you’re considering a pregnancy. You aren’t like your friends that don’t have IBD and can decide to get pregnant without consulting anyone. Give your medical team the opportunity to help you and to share in all the excitement and hopefulness of this time in your life.

Review medications. There are many good options for managing IBD in pregnancy. Still, there are some drugs (e.g., methotrexate) that should be discontinued because they are known to be unsafe.

Develop a flare-up plan. During pregnancy, IBD will stay the same, get better, or get worse. You don’t know which of these will happen, so it’s a good idea to plan ahead for how to manage IBD in a pregnancy if it flares up.

Once those plans are in place, and congratulations are in order, consider taking these steps:

Tracking symptoms. It’s important to check in with your body and recognize if there’s anything that needs to be addressed.

Managing mental health. Pregnancies can bring up stress and other problems that might have gone by the wayside previously. Engaging with a mental health provider, a support group, or other trusted moms can help ease anxiety.

Seek other opinions. If one of your physicians recommends stopping your medications, but another says that it is safe, you need a tie-breaker. A third opinion could be a telehealth touchpoint with a specialist or an expert in teratology, such as those at MotherToBaby.

Don’t forget about labor and delivery and the postpartum period when making plans. After baby is here, there may be a need to re-evaluate and change course again.

Make postpartum plans. A flare-up after delivery is a possibility, and it’s important not only to be aware of any new symptoms but also to plan for this possibility before delivery.

Plan for breastfeeding. Similarly to being pregnant, there’s stigma and misinformation around drugs while nursing. There are good options that are known to be safe, and it’s not necessary to go unmedicated while breastfeeding.

Continue to lean on your healthcare providers and your community. Pregnancy and delivery are just the start of the journey. There are many more decisions to be made and plans to be formulated as your child grows and your disease changes. Keep engaging with your communities, your healthcare providers, and your mom groups as you navigate all the changes.

And finally: give yourself grace. Parents with IBD are doing the best they can with the information they have, every single day. Trust that you know what’s best for you and for your family.