I wrote about gaslighting to some degree recently when I shared my experience as a person of color with migraines. The same concept applies. Gaslighting can include microaggressions, a lack of respect, and a disregard for your reality as a patient all in one 15-minute office visit.
Studies show that medical gaslighting (when you make someone believe their feelings aren’t valid) impacts women and people of color more often than other groups. Well, that’s a double for me. I’m a Black woman and have been a victim of medical gaslighting throughout my life. I didn’t have a name for it, but it didn’t make it less real.
As I write this with tears streaming down my face, I’m mindful of the people I know who were victims of medical gaslighting and it cost them their lives. There are people in my own family who were ignored or dismissed and they aren’t here to talk about it. I’m not talking about human error. Doctors are human and I make space for that. I’m talking about when symptoms are dismissed or assumptions are made that someone isn’t intelligent enough to understand their own bodies. This makes me so angry and equally sad. Sometimes I’ll ask a doctor to pretend I’m a family member. I’ll see their posture change.
For many years (especially when I was younger) many of my doctors encouraged me to keep a migraine journal instead of offering pain medications or treatment options. I understand the value of tracking symptoms to help note triggers. I didn’t understand why some in the medical community were “OK” with me remaining in pain.
Unfortunately, many of the doctors who took this approach were white males. The very first doctor to prescribe prescription migraine medication for me was a female woman of color. It was life-changing. Before then, if over-the-counter meds didn’t work, I’d find myself in the ER or urgent care with a debilitating headache and vomiting. There were times I thought I would die. It didn’t seem right or as a sustainable way to address my migraines.
Many times, I felt I had to prove that I had migraines. I thought about that each time I was asked to keep a journal. I tried my best to convey that migraines ran in my family. That didn’t seem to matter. With some doctors, they implied I was exaggerating symptoms. Why would anyone want to lie about migraines? I can speak for myself and say that a Saturday afternoon in the ER was not how I wanted to spend my time.
The focus in those gaslighting days was often on triggers. Yes, stress can trigger migraines for me, but it doesn’t mean that I’m solely dealing with anxiety. When you’re a victim of gaslighting, you can feel crazy when you have a migraine and when you don’t. To sit in a cold doctor’s office with a white robe is already vulnerable enough.
To those who right now are experiencing medical gaslighting, here are the ways I’ve fought back.
- Trust your gut. I can’t compete on medical prowess with someone who’s spent years in medical school. What I can stand on is how I feel about a conversation in the moment. I’ve gotten better at this as I’ve gotten older. I can tell very quickly if a doctor is going to meet me halfway or if I need to keep looking. If my questions are dismissed or symptoms minimized I’m often on the journey to find another doctor.
- Get a second, third, fourth opinion. I wish this was just part of the medical process. I wish every patient was required to get a second opinion before moving forward with care. I wish doctors were required to compare notes with a colleague before making a final decision. I will sometimes let one doctor know that I will be sharing the notes with another doctor. I’ve seen their stance change when they realize that someone will be “looking over their work.” We all bring our biases to work with us. For some professionals, however, the stakes are so much higher.
- Don’t let money be the factor. We all have budgets and financial commitments. When it comes to my health, however, I’m willing to spend a little more to get the answers I need. I’ve had doctors withhold tests because “they were very expensive.” I should be the judge on whether something is too expensive. For me, this might mean budgeting (or using my medical flex spending card) for an alternative therapy. It might mean seeing someone who is out-of-network but highly rated. It might also mean getting a screening test that might be more expensive but can rule out certain diseases.
- Bring a friend. I can’t count the number of times I brought my husband to a doctor’s appointment and got a totally different response. It felt like my comments were taken more seriously. I feel like it reminds the doctor that people out here love me, even if you see me as just a number.
Thankfully, there are compassionate and caring doctors all over the world. But this is an area where the margin of error must be low. A “bad day” at work for some of us means a derailed project. For doctors, an off day can be a matter of life or death. Let’s replace gaslighting with trust, compassion, and respect. Let’s give everyone the chance to live their best lives.
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