Imagine If My Pain Was Taken Seriously
Medical gaslighting in endometriosis care.
An interview with Tracey Lindeman by Esther Moon
Esther Moon: Would you be able to tell me a little bit more about your experience of seeking care for endometriosis? What surprised you that you didn’t already know from your own experience?
Tracey Lindeman: My experience was very long as it took hundreds of doctor’s appointments to get a diagnosis and finally get treatment. This all started with my first period which came almost too fast at the age of 11, between grade 6 to grade 7, so a time in someone’s life when they are already going through immense change. And I was like what the hell is this? It was so painful, long, and heavy, but everyone around me just said it was normal. They said that you’re supposed to be in agony, to be bleeding so much that you become anemic.That this is just the way things are for women. However, when I became a full-on adult, I realized that this wasn’t true. It’s not normal to have such awful periods, to have so much pain, and bleed so heavily. It also wasn’t just doctors that normalized the pain, but female family members and other adults around me as well. It really spoke to me how that kind of stuff gets passed down, like how bad information can sound true if it comes from the people that you trust.
EM: What surprised you that you didn’t already know from your own experience?
TL: What I was experiencing was not normal, I had done nothing to cause it, and that nothing I could have done in terms of self help would fix me. These realizations made me sad because the opposite was what was taught by everyone to myself including doctors. But when I started getting mad at the system, it helped. It helped me feel less angry at myself. Understanding that not only my experience was part of something systemic but also understanding the history behind it that makes the system operate as it does right now helped me in fighting for myself.
EM: It really moved me to read about how a disease that women have such a high prevalence of is simply overlooked because “it doesn’t kill you.”
TL: In the sense, yes, it will not kill you. It’s not like having cancer where you will contract it and without treatment you could possibly die within a couple of years. . But there have been people who have died by suicide, who have become addicted to other drugs and died accidentally from that because of endo. People live in constant agony for years and we don’t have any feeling of accountability because they are women or gender minorities and we think that’s just how a woman should live. It’s a lot similar to women who suffer through childbirth, through periods, or it’s the glass ceiling notion as well where women should be constantly suffering. Our society has invested a lot in making sure that other people suffer.
EM: How do you think that for patients like us, how can we gain control when there’s already an imbalance between yourself and the person in the white coat?
TL: I talk about in the book about how the biggest thing I’ve learned about was the concept of epistemic justice and how that’s used in medicine. It speaks to this idea that the knowledge you have as a patient is not considered valid information because you didn’t require it from an institution. So I would take all of this knowledge and research I have done with me and bring that sort of information up to doctors and they would simply say “Oh yeah, that’s very nice!” You end up getting put into this position where you never win good care because you’re either a pushover, or you don’t fit the “role” — you let them do whatever they want. Or you fight back and they hate you for it and withhold all the things that you want as a way of punishing you. So people try to be in that middle space but most aren’t successful at it.
EM: What kind of world can you imagine for people who have gone through similar battles? Who can be held accountable? How can we identify who is pulling the levers/keeping the system/status quo in place?
TL: It’s hard to say because endo care is horrible worldwide. It is a global failure and I don’t think it’s one person who built this misogynistic world we live in, it was a real team effort. And unfortunately, it almost doesn’t matter who did it, right? It’s who does it now, and who’s going to do it in the future.
However I think medical schools have a huge responsibility as they’re notoriously socially conservative. I need people who are training to become family medicine/primary care doctors to hear us. They need to hear from patients who have been screwed by the system, to learn about the failures they will inherit. But honestly? People always say doctors don’t have time for that…but the amount of doctors and time I’ve spent trying to explain my pain, could have decreased that burden for all of us if I had been listened to the first time. Imagine if the first time my pain was taken seriously?