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July 17, 2021

Reclaiming my life after 13 years of medical gaslighting

Photo by Andrea Piacquadio on Pexels.

This memory came up that I posted three years ago. Three years ago I had no diagnosis for anything that happened to me—abdominal pain, extreme inflammation, brain hemorrhaging, etc. I still new something was wrong. I knew I was being gaslit. But ten years in, I basically had accepted this was my fate.

In early 2019 I started with a new acupuncturist (shout out Emily Herbst!) and she believed me. She started working intensely with me and my quality of life slowly began to improve. Then I was able to start with a personal trainer (hey Katie Foster!) and she also believed me, and my life improved a little more.

All the while I was still having tons of invasive testing done (have you ever had a balloon inflated inside your uterus while you were awake but told you could drive the 90 minutes home? Well that’s the tip of the iceberg.) and told over and over I was fine.

But, because I was making little strides thanks to a couple people believing me, I kept going. The chasm between me and the medical community was growing bigger, though, because no one believed me and after now 11 years, I could only take so much of being told I was not in pain. When I was.

Then in 2019 my pain episodes became so extreme I would have to hide between cars in parking lots on the pavement to avoid having 911 called on me. I didn’t want that because I knew I would be told I was fine. So I would just hide, ride it out, and swallow more meds than I should (spoiler, that made things worse long term because stomach ulcers are the worst…).

I began dating my current partner and he saw all this with fresh eyes and would not accept (as I had) that this was just my life. I told him it was part of the deal being with me, and there was no hope. After now 12 years of gaslighting, I thought that was true.

Thankfully, he pushed me and with the hope and energy of a new advocate, I tried one more time. I finally convinced someone (by crying and begging) in the medical community to do an exploratory surgery. I had to jump through hoops as they made me try a bunch of things I had already tried to “prove” I needed it. But I did it.

That surgery (my second) showed a large hemorrhagic cyst on my ovary that had been bleeding all over my other organs and diagnosed me with endometriosis. This was the first time that word had been brought up in 12-13 years of doctors. But, it wasn’t that simple. It turned out the doctor that operated was wildly unqualified. I had awful complications (for which he yelled at me and sent me for more invasive testing). He told me everything that could be done was done, when in reality he had left a ton of disease in me…and not even put my ovary back where it belonged.

When the pain returned in full force less than a year later, this time I had the support of a supportive partner and a diagnosis in my pocket, and I was unwilling to be gaslit any longer. I found a specialist out of state that only took cash and signed up for another, more extensive, surgery by someone who actually knew what they were doing (thanks Nicholas Fogelson – Physician).

I’m only 10 weeks post that surgery and I feel better than I have since I was 20.

3 years ago I posted this video and I knew I was not being believed by doctors but I also thought that was never going to change. Thankfully, I kept trying, made changes in my life to surround myself with people who believed me, and kept demanding that my life could be better. I’m sure I’ll have more challenges, but the gaslighting is over.

If you feel hopeless with pain and suffering, message me and I’m happy to keep sharing what I know. A few people believed me, and that was enough to start putting wheels in motion to reclaim my life.


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