Facing Abortion Stigma in Medicine as a Disabled Woman
By Lizzie (She/her)
This article was first published on the U.S Gender and Disability Alliance Blog. It is available here.
Not trusting patients is a hallmark of the current medical system. Some patients are even less likely to be trusted by their health care providers, facing skepticism, paternalism, and even deceit in the course of seeking medical care. Sexual and reproductive health choices and behaviors are especially likely to be scrutinized and questioned, in particular those related to pregnancy, including ending a pregnancy.
In the two years before I had an abortion, I experienced lots of medical gaslighting and substandard care in my pursuit of diagnoses and treatments for chronic illnesses. I’d found a primary care doctor who seemed to be willing to work with me and more methodically rule out possible diagnoses. When I finally received the main diagnosis underlying my symptoms, hypermobile Ehlers Danlos Syndrome, the genetic counselor told me I should come back for more in-depth testing if I ever wanted to “get pregnant.” I was in fact pregnant when she told me that, and I was really, really not well. Every symptom for which I’d been searching for causes was flaring up with the pregnancy, especially chronic pain, and I was extremely nauseous.
Doctors Don’t Trust Us as Experts of Our Own Bodies and Lives
As soon as I’d seen the positive pregnancy test a few days ahead of that appointment with genetics, I knew I wanted to have an abortion. The next day, I made an appointment at a local clinic for a week out. Before my abortion, I went to the primary care doctor who had trusted me enough to order in-depth testing and try additional specialists based on my own research, allowing me to finally reach the answers I was looking for. I wanted to confirm the pregnancy and to get a refill of an anti-nausea medication I’d taken periodically for migraine over the years because I was so nauseous from the pregnancy.
When I asked my doctor for the anti-nausea medication, she noted there was a small risk of an interaction with my antidepressant but agreed to prescribe it after I said I was comfortable with it. She started to process the prescription in response, but then stopped and told me the medication wasn’t meant to be prescribed to pregnant people as it had not been shown to be safe for the developing pregnancy. I reminded her I had an abortion appointment scheduled for a few days out, but she still refused to send in the prescription in case I “changed my mind” and ultimately regretted taking the medication.
It’s important to note that this drug is not risky for the pregnant person, and it is not even unsafe for the actual pregnancy, it just hasn’t had the extensive research done to definitively show it is safe. But I found out later from my abortion providers that it’s actually prescribed off-label for morning sickness all the time.
After my insurance denied the pregnancy specialty drug she did prescribe me and it was going to cost hundreds of dollars, I sent my doctor a message asking her again to prescribe my usual medication and she did. But my doctor had withheld my preferred treatment with the same logic that states use to enact waiting periods: asking, what if this person doesn’t actually know themselves and their life and their body well enough to make a decision to end a pregnancy without us checking in again a day or two later?
This doctor, who is no longer my primary care doctor — I never went back to her again — supported my bodily autonomy as a patient and gave me agency over my testing and treatment choices for my chronic symptoms until I was pregnant, when the opposite became true. Her trust in me and willingness to share medical decisions with me only turned out to be conditional, the condition being that I was not pregnant.
Insurance Barriers to Abortion Access
My online account for my insurance policy also stated that the cost of my abortion would be fully covered, so I was surprised to receive a bill a few months later for a few hundred dollars. My insurance company told me the online policy lookup tool I’d looked at was only referring to medically necessary abortions but that if I could get a doctor to attest to my abortion being medically necessary, they would retroactively cover those costs.
When I asked my geneticist if he would write a note, he refused saying there isn’t enough research showing a definitive link between my specific health condition and increased risk of poor health outcomes during pregnancy and birth, even though that link is actually well documented despite my condition being very under-researched. He just wasn’t familiar enough with the literature.
Since I didn’t have another doctor who was familiar enough with my condition at the time that I could ask and I was just feeling totally done with interacting with doctors about it, I ended up paying that bill entirely myself, even though I got my abortion in New York City, in 2020, at a Planned Parenthood, and I tried to bill my very expensive, privately-provided insurance policy I received through the New York state insurance exchange established through the ACA.
Unsupported, Alone, and Stripped of Agency and Autonomy
I felt similar emotions both when my primary care doctor refused to send in the anti-nausea prescription and when the geneticist refused to process the authorization for my insurance coverage. I felt unsupported, alone, and like my agency and autonomy had been taken away. These doctors had been some of the only ones out of the many providers I’d seen over the previous two years who took the time to listen to my concerns, identify my diagnoses, and suggest helpful treatment plans.
But when it came to my reproductive health, in this case a pregnancy that ended via abortion, I felt they both abandoned me and my needs in the pursuit of protecting themselves, particularly from a legal perspective. I also wonder if perhaps they also sought to avoid any amount of participation in my abortion care because abortion stigma is pervasive throughout medicine and beyond.
Abortion Care Intersects with All Types of Healthcare
All health care providers should learn how to identify and resist abortion stigma and should understand that despite abortion care being treated as exceptional and separate from the rest of health care, in reality, abortion intersects with all types of medicine, especially for chronically ill and disabled people. Competence in caring for abortion patients is a necessity no matter one’s role in the medical system. Principles of shared decision making and believing patients can’t be compromised when pregnancy and abortion are involved. Incorporating abortion more into medical training programs and continuing medical education efforts for all fields of medicine can go a long way in supporting pregnant patients, especially abortion patients, and in particular, chronically ill and/or disabled abortion patients.
Editor’s note
This story is the first in a series documenting the experiences of disabled people who have accessed or attempted to access sexual and reproductive healthcare and/ or gender affirming healthcare. For more information about the storytelling project see Launching the Storytelling Project on Access to Sexual and Reproductive Healthcare and Gender Affirming Healthcare for Disabled People.
About the author
Lizzie (she/ her) is a 28 year old Research Project Manager from New York. She identifies as having developmental, physical, and learning disabilities.
