By Madora Pennington, PNN Columnist

After seeing a neurologist earlier this month for cluster headaches, Tara Rule’s doctor walked her to the front desk. She thanked him. Then, in her car, she burst into tears. Instead of treating her pain, the doctor turned the appointment into a lecture about a hypothetical pregnancy that she didn't want. He had made her feel so horrible, she wanted to die.

“I can’t keep living in world where it is a game to them,” she said to herself.

Feeling hopeless and alone, Rule pulled out her cellphone and, tears streaming down her face, recorded a video recounting what had just happened and how she felt about it.

It is rare to actually see the raw, visceral reaction to medical gaslighting, and how it affects someone’s self-worth and mental health. Many patients leave such appointments doubting themselves, often becoming unwilling to seek medical care as the medical traumas add up.

Rule, 31, is already on disability from a lifetime of complex medical problems, including Ehlers-Danlos Syndrome (EDS), a connective tissue disorder.

When she realized her appointment at a Glen Falls, New York hospital was going sideways, she reached into her bag and began an audio recording with her cellphone. New York allows single party consent to recording, so she didn't need to have the doctor’s permission.

Rule was trying to keep it together, despite her intense pain from debilitating headaches. She wanted the recording so she could sort out what happened later. She wanted to make sure her PTSD from past medical trauma was not triggering her, possibly causing her to misunderstand the doctor.

In the recording, Rule’s neurologist said he would not give her a certain medication to treat her headache. His reason? She could get pregnant and that particular drug — which he did not name — can cause birth defects. So he doesn't prescribe it to women of "childbearing age."

Rule pushed back, pointing out she is already on a medication for an autoimmune condition that can cause birth defects and miscarriages. And because EDS is a genetic disorder, she does not want to have a child and risk passing it on. Plus, a pregnancy could be harmful for her health.

Instead of making the appointment about Rule's pain and her need for treatment, she says the doctor asked her intrusive questions about her sex life. He disregarded the medical information she provided and patronizingly suggested she might change her mind if she were pregnant. He also insisted her sexual partner would have to consent to her being treated with the unnamed drug.

Rule posted her anguished video on TikTok, and it soon went viral. She's received countless messages from others who have been through similar encounters. While it made her feel less alone, it saddened Rule deeply to learn how many people have stories like hers. The media took notice with articles on Jezebel and in the Albany Times Union.

Severe headaches and cranio-cervical pain are commonly seen in people with EDS, an inherited failure of the body to produce strong collagen. Rule has suffered from migraines since she got a concussion at age eight. Her cluster headaches started in 2016.

“They are a whole different beast,” she told me. “The pain is indescribable. It doesn’t let up. It won’t go away.” Rule says she is a happy person who is not suicidal, but pain like that makes you wish you weren’t alive.

Rather than treat the suffering patient in front of him, the neurologist prioritized a hypothetical situation, in which Rule's birth control fails and she winds up pregnant. For him, this fantasy scenario was more important than giving her the best medical option for pain relief.

Rule complained to the hospital, which apologized and began an investigation. She also created a petition to end doctors' ability to deny treatment to women because they might get pregnant. So far, over 25,000 people have signed it, making it one of the most popular petitions on Change.org.

“As a living, breathing human being who exists, I feel it is absurd that doctors who are expected to provide the best, most effective care and treatments to their patients are able to deny effective treatments due to the potential for birth defects in patients of child bearing age who are not currently pregnant,” she wrote in the petition. 

The week after her botched meeting with the neurologist, Rule found herself in throes of horrendous head pain and took herself to urgent care. She was receiving an IV and oxygen when a group of doctors and security personnel marched into her room. She panicked, thinking of when she was told she had lesions on her brain. Were these people coming to give her bad news like that?

No, the staff was not here to provide medical services. They had come to discharge her. The hospital Rule had complained to apparently called other clinics in the area about her. The urgent care personnel accused her of livestreaming the appointment with her neurologist, which she did not. Nonetheless, they wanted her out immediately. She tried to give the desk her new insurance information as she left, but the staff had closed the window and simply stared at her.

“Shouldn’t they be putting that doctor on leave rather than track my social media and call hospitals? It’s scary,” she told PNN.

Now Rule is afraid to seek medical care. Most of the facilities in her area are owned by that hospital system. Her primary care doctor is part of it. She is not sure if any of them will see her.

“I’m on disability. I have no money. Am I going to have to move?” she wonders.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies.