gaslit: a discussion on medical malpractice

Generally speaking, the world has almost no grasp on any illness other than a cold. It’s no more than a concept to most. I don’t know what abled people picture when they think of disease, because I’ve almost always been sick. Do they picture dark circles under one’s eyes? Do they imaging a ghostly figure laying unconscious in a hospital bed? Or, maybe they just think of cough drops, Kleenex, and Pepto Bismol. Whatever it is they may associate with the word “sick,” I can safely say that people like me probably don’t fit the picture. Because of this, living with chronic illness is even harder than it should be. Not only does this affect the way I’m treated by people on day to day basis; because my illnesses are invisible, doctors and other medical professionals jeopardize my life without much hesitation. This is an issue affecting many spoonies in a number of different ways. Lately, I’ve been especially affected by gaslighting.

Starting in February, I started to feel a different kind of sick than I have for so long. This subtle but constantly present malaise turned into this major sense of impending doom I couldn’t shake. I knew something was about to change. My food reactions increased, and I almost stopped eating entirely. I walked around in a daze, if at all. Before I knew it, I was passing out on the daily. From there, tremors and seizures started to develop. My parents took me to the ER more times than I can remember. Despite the fact that my muscle spasms got so intense that I could barely breathe, they did nothing. They finally admitted me for an EEG, but when it came back clear, they didn’t explore any other options (and there are many). The hospital I trusted most gave up on me, endangering my life.

An inexperienced intern decided to call psych against my wishes. Now, this isn’t the first time a lazy medical team has told me my illness was all in my head, but it was surely the worst. They told me that, in order to express myself, I had to be angry, even though I was only angry at them. They told me I was putting up a front as I laid vulnerable in a hospital bed before them. They told me I was doing it to myself when they were the ones refusing to help me. Never in my life have I felt so hopeless and alone. Little did I know, my neurologist was fighting for me not to get sent to the adult ward (mind you, I’m still a pediatric patient). Thank God none of their plans went through (except for one uncalled for and rash evaluation), but that didn’t mean that I left that hospital feeling any less distressed.

This experience was over a month ago, and even though I feel healthier and more secure with my new doctor, I haven’t fully healed. As it turns out, I likely have a blood condition paired with frequent lack of blood flow to the brain. All we have to do is complete some testing, and then it’s confirmed. None of this is in my head, and logically speaking, I’ve known that the whole time. Still, the poison on those doctors’ tongues crept its way into my head. My flashbacks are more frequent, and more intense. I doubt myself to no avail. I’m traumatized, plain and simple. I was blamed for my own biggest suffering, the kind of suffering I wouldn’t wish on my worst enemy. Subsequently, I lost track of myself.

Living like this always leaves me wondering how many others have to face the same injustices as I do. Recently, I took it upon myself to ask my fellow spoonies on twitter. I began with the question, “have you ever had a doctor who incorrectly blamed your physical illness on your mental state?” 83% of voters said yes. That hatred I feel towards that number is astounding, but it was my third poll that really sent a shiver down my spine. I asked, “do you feel that the misdiagnosis put your mental and/or physical health at risk?” 94% answered yes.

I received a lot of responses to these polls, and I appreciate all of them- thank you to everyone who replied. For one, Allie, @chronicallyteen, said: “For 2 years, [doctors] blamed my tachycardia on anxiety, and now my heart function is impaired. It was fine then, but wasn't treated and declined.” Because of her doctors’ laziness and ignorance, she now has to put up with not only tachycardia (which is terrible in and of itself), but added heart issues as well.

“I hate when anxiety is always the first thought even when you are experiencing tachycardia- where is the open mindedness and oath to heal?” Sarah B. Tompkins, AKA @SarestBarest commented. I have seen firsthand how quickly doctors jump to anxiety or stress as an explanation for tachycardia. Illnesses like POTS and MCAS are associated with both tachycardia and anxiety as symptoms. Just because they sometimes come hand in hand, doesn't mean they always have to. Illness isn't so easy to define.

Although to some it hasn’t happened recently, it has in the past. Brigid Keely (@brigidkeely) says, “this did happen when I was younger. I'm lucky that my current GP didn't question me having fibromyalgia or suggest I was imagining it.” She offered a very interesting and important perspective on her standpoint: “…that tells so much about our world: I feel lucky that I got appropriate treatment.” When I leave appointments or hospital stays that went smoothly, I feel like I’m glowing. I head home rejoicing that I didn’t get blamed or bullied. Isn’t it odd that I’m less afraid of having a near death experience than I am of the doctor’s response to it? It’s twisted!

It’s obvious now that a majority of us feel mistreated by the medical world, whether it was years ago or just the other day. People who don’t have to deal with a lot of health problems are shocked by my experiences. When you hear a story like this, it’s easy to assume it was a one time thing. It seems like a rarity, and I wish it was. But, it isn’t. There are tons of chronically ill people being told that they’re “crazy,” or that their illness is all in their heads. Not only is this a threat to their wellbeing, but it uses the shame associated with mental illness as a weapon. Medical professionals gaslighting their patients fuels the stigma associated with both physical and mental disability.

(image from wokegiant.com)

It dawned on me the other day how many people I could sue for medical malpractice, how many careers I could end. If every chronically ill person who was misdiagnosed and/or blamed for their illness sued the doctors who made the mistake, too many hospitals would go out of business. Lack of awareness really is that widespread, and it’s literally killing us. If that fact alone doesn’t motivate a change, I don’t know what will. (image from wokegiant.com)

#gaslighting #medicalmalpractice #discussion #ableism #trauma #community #POTS #dysautonomia