Tuesday, October 17, 2017

Story Time: Gaslighting by Doctors

gerund or present participle: gaslighting

    manipulate (someone) by psychological means into questioning their own sanity.


Like most chronic illness fighters, my path to a diagnosis wasn't an easy one. Actually, it's more like a never-ending one, as science changes and new 'clues' appear.

Many us of, especially those with almost whole body involvement, are first looked at as malingerers. Especially when we first come in with a giant list of complaints, yet our tests look totally normal.

It took me 5-6 years to get to this point of diagnosis and treatment, and I've experienced too many accounts of gaslighting by doctors to explain.

This story is from this year, 2017, and I can't decide if I'm healed from it emotionally yet. But what I do know, is sometimes writing about it helps, so that's what I'm going to do.

My endocrinologist is an amazing woman. We know her well, as she treats my grandmother, my mom, and me, and was actually treating my mom when she was pregnant with me. Thanks to some miracle, I had her on my side the whole time. She told me all the time that she knew something wasn't right and that she'd do whatever she could to help it get figured out, even if there might not be any treatment.

During a hospital admission in March, my endocrinologist pushed for neurology to come see me and re-evaluate. At this point, in their mind I had conversion disorder.

After 9 days of waiting, I had a neurologist come in to see me. He was young, looked nice, and came in with about 8 medical students. He asked me if I was okay with the medical students observing and I told him that was fine.

At this moment, this was my lifeline. I was getting no proper medical treatment for any neurological issues, and I had all my eggs in one basket.

He did a neurological exam, asked me to walk and proceeded to tell me, "No neurological condition can make you walk like that." Obviously as someone who doesn't have a wide gait on purpose, that was a slap in the face and somewhat embarrassing in front of all the medical students. He proceeded to joke about it with them. There's no doubt he left that room and told them I was crazy.

My mom asked "But why is she so tired all the time?", to which he responded, "I'd be tired if I walked like that all the time too."

He left with his team of students who had awkward faces saying bye, and I sobbed. I sobbed and I sobbed and I sobbed. I asked my parents to leave the room because I just needed to sob. I felt like I must be crazy. A nurse sent from heaven came in to talk to me eventually. She reassured me that it was going to be okay, and made me feel like I had a friend. (I brought her a gift later that week after being discharged.)

So, not only had that doctor been completely and utterly wrong, but he had just taught 8 young future doctors that that was the correct way to treat a patient.

This story still makes my blood boil, and I cannot wait for the day that I run into him in the hallway and tell him what he missed, a rare disease, which is now being treated at the Neuro. And no doubt will I tell him off as well. I'm really not a confrontational person, but I can still feel the pain from that day. I will tell him that he should never treat a patient like that in front of learning minds again. I will tell him how unprofessional he was. I will tell him that I hope he learns from this.

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