Medical gaslighting is, unfortunately, an all too common experience in healthcare, especially among individuals with chronic illness. It’s something I’d known about throughout the years of my own chronic illnesses. Yet somehow, it had never happened to me.

That is, until a few weeks ago.

What is Medical Gaslighting?

The term gaslighting may sound familiar. It is a form of psychological abuse that occurs when someone manipulates and sows seeds of doubt in another’s mind. This causes the victim to doubt their sanity, memories, or reality. If that sounds insidious, it’s because it is. The victimizer uses denial, misdirection, and disinformation in an attempt to destabilize and delegitimize the victim’s beliefs about something.

So what does medical gaslighting look like? Medical gaslighting occurs when a healthcare practitioner downplays or dismisses a patient’s symptoms, claiming they are caused by something else or even that they are imaginary. For example, a doctor sees a patient with a racing heart, shortness of breath, and lightheadedness. The doctor may gaslight the patient by telling them their symptoms are caused by anxiety when the patient actually has dysautonomia.

My Experience with Medical Gaslighting

I never expected to experience medical gaslighting at the hands of the doctors in the emergency department where my husband works as an emergency medicine pharmacy specialist. They know my husband well and follow the creed, “We take care of our own”.

Going to the Emergency Department

I recently decided to seek care at the emergency department for worsening positional headaches. For several days prior to going to the ED, the pain in the back of my head and neck while in an upright posture was so severe that I was bedridden. Due to these headaches in the setting of my history of a brain tumor and intracranial aneurysm, I knew some imaging would be done.

However, I admittedly had a rather unusual diagnosis in my mind. Based on my medical history and symptoms, I determined it was possible that I had spontaneous intracranial hypotension (SIH). Essentially, a weakness in connective tissue, such as that caused by Ehlers-Danlos Syndrome, can cause a spontaneous tear in the connective tissue surrounding the brain and spinal cord. This causes a leak of cerebrospinal fluid (CSF). The result is a positional headache; your head feels worse when you’re upright. I had other symptoms of SIH as well, including neck pain and stiffness, nausea, dizziness, photophobia, phonophobia, pain between the shoulder blades, brain fog, arm numbness, facial numbness, and fatigue. SIH is considered rare, but is likely underdiagnosed. I knew I was taking a risk when I boldly proclaimed to the doctors that I thought I might have SIH.

How It Happened

The resident and attending doctor at least humored me and were very polite and truly concerned about how I was feeling. They sent me for a CT scan, which was thankfully normal; there was no bleed and no new aneurysm. We decided to try a caffeine infusion, which can help for CSF leaks caused by recent lumbar punctures. It has not shown to be effective for SIH. The resident said it would make me feel better.

An hour and 500 mg of caffeine later, I was practically vibrating off the bed and my pain wasn’t at all improved. We waited…and waited…and waited. After another hour passed, my nurse finally came into the room…with my discharge papers.

I almost went through the roof and I think my husband wanted to punch some people in the face.

First of all, my nurse had not been in to see me for two hours. Second, she never came in to reassess a pain score to see if the caffeine had improved my pain. If it had, she could then tell the doctors I was feeling better and could then be discharged. When I told her that my pain wasn’t improved even a little bit, she became concerned and said she would go tell the doctor.

It may not look like it at first, but that is an example of medical gaslighting.

The Pain of Medical Gaslighting

When the nurse walked out of the room, I started crying. Despite having never experienced it before, I immediately recognized that I had just experienced medical gaslighting. My husband sat there in shock, angered by the fact that physicians he knew and trusted treated me in such a dismissive way.

It hurt physically. My pain was no better. The doctors wanted me to believe that the caffeine infusion was all I needed and that I would be all fixed up and ready to go home. That’s why they signed my discharge papers before the infusion was even done and didn’t feel the need to reassess a pain score. They tried to tell me I was better when I wasn’t. They clearly forgot they were dealing with a medically retired pharmacist as a patient.

It hurt mentally. I’ve struggled with severe depression since last summer when my POTS relapsed. Then these headaches began in December and worsened in May, causing my mental health to tank even further. I’m not ok. The doctors tried to dismiss me and downplay my pain. That spoke into the hellish voice in my head that tells me I’m worthless and my pain isn’t worth anyone’s time.

It hurt emotionally. I’ve struggled with this pain for six months now. I haven’t been the mother I want to be to my daughter. I haven’t been the wife I want to be to my husband. It’s made me a burden on others whose help I need to take care of my daughter. Pain makes me irritable and unpleasant to be around.

Pushing Back Against Medical Gaslighting

After I finished crying, I got mad and took the bull by the horns.

I insisted on a neurology consult. To add insult to injury, the staff neurologist gaslit me, too. I could read his body language the second he walked into the room. He insisted I didn’t actually have any symptoms consistent with SIH. Yet the symptoms I kept reiterating over and over are entirely classic of SIH and any neurologist worth their degree should know that. But once the doctors knew I wasn’t playing, they pulled major strings to get me an MRI. Because I put my foot down, I got the care that put me on track towards a potential diagnosis.

But of course, I had to be kicked on the way out. The doctor who discharged me, also a respected colleague of my husband’s, told me I didn’t have SIH because of the way I was reacting (or rather, not reacting) to the pain in my head and neck. He asked me to sit up and tell him about my pain. When I sat up, my pain gradually spread up my neck into the back of my head and I told him so. He said, “If you had SIH, you’d be grabbing your head screaming.”

Somehow I managed to experience medical gaslighting at the hands of four physicians in one 13-hour ED visit.

I don’t have a firm diagnosis yet. But guess what? Additional testing and the opinions of more specialized physicians are indeed pointing to SIH.

If you find yourself experiencing medical gaslighting, don’t give up. Find a new doctor. Keep pushing and above all, advocate for yourself until you get the care you deserve.

2022 Addendum

I advocated. I got the care I deserved at a better medical institution. And guess what? I. Was. Right.

💛ribbonrx