A blog post in memory of Dr Susan Moore, kira Dixon Johnson, Jacquie Beckwith, Engracia Figueroa and many more who the medical system failed.
Millions of young people, especially women are suffering from various debilitating lifelong illnesses. So many of these women are rightfully complaining of gaslighting, neglect, they are just being told their symptoms are anxiety, hormones, and attention seeking. They are told to try box breathing, meditation maybe get a babysitter for the little one and take a night out with the girls. Of course that would be beneficial advice if somebody was going through genuine stress and anxiety, but these women are coming into the doctors with severe pain, extremely heavy periods, neurological symptoms such as seizures, migraines, tremors these symptoms can be severe to the point where they're unable to keep down food, have horrible gastrointestinal problems, blood pressure issues and heart problems and every single little thing can be attributed to "anxiety" if you're talking to the wrong doctor. Once they put that in your chart it's like a signal to all the other doctors to just ignore your symptoms. The anxiety blacklist. "Oh this one has anxiety in the chart, let's not waste our time." That's at least how it feels for so many women, including myself.
Many women have lost their lives to medical gaslighting, doctors claim these are just common medical errors, or use legal teams to make other excuses for them. Regardless of the proof and evidence that these women cried for help with very severe symptoms and illness.
Let's take for example the devastating case of Dr. Susan Moore. Moore was a black woman, she was extremely ill with covid. Moore was an internist, she was born in Jamaica and had a degree in engineering from the kettering university in Flint Michigan, she was an industrial engineer for 10 years before returning to school she was a 2002 graduate of the University of Michigan medical school. Unfortunately she experienced like many of us what we have all been crying out about for decades as women. She was made to feel like a "drug addict" regardless of her testing positive for covid-19, the doctors refused her pain medication. She was refused treatment with antiviral drugs, in addition she begged for a CT scan she reported that a white doctor said "you're not even short of breath" yet she most definitely was.
She took to the internet and vlogged her experience as it was happening, the videos are upsetting and startling and far too close to home for so many women, especially women of color. I know that if she did not vlog that experience the public would have found reasons to make their own story as to what actually happened to her, as these types of stories are so unbelievable to most people that have not gone through it themselves.
"I put forth and maintain if I was white I wouldn't have to go through that this is how black people get killed when you send them home and they don't know how to fight for themselves" December 7th 2020 she was discharged after begging for her life not only within the hospital but also publicly through shocking video vlogs, Moore died at the young age of 52 at Ascension- St Vincent hospital in Carmel on December 2020. This could have been prevented.
I personally have gone through medical gas lighting and neglect since the age of 14 years old, a lot of this can be highlighted in my first blog post. I've been laughed at for needing to use a wheelchair because myalgic encephalomyelitis is one of the least researched diseases in the world and they jump to the conclusion that it's some mild fatigue, even though the CDC states 26% of us can't even leave bed and that the neuroimmune disease is considered a severe lifelong disability.
I can't count how many times doctors and nurses have rolled their eyes at me while I'm crying out in pain, I've learned how to silence my cries and hold in the pain just be taken seriously it's had detrimental effects on my mental health. I had a large ovarian cyst burst and was unaware that I had ovarian cysts back when I was a teenager, my ex-boyfriend called 911 and they took me in the ambulance because it was hard for me to move I told them I was having extreme pain in my lower stomach I was crying. One of the paramedics thought it would be funny to get behind me and dance and mock me by holding his lower stomach pretending to cry as he locked eyes with my ex-boyfriend who was also in the vehicle. Once I got to the emergency department they did a scan and found blood, free fluid and a burst ovarian cyst, but when I was initially in there they treated me like I was in there for narcotics when I never had a history previous. To cover up the negligence the doctor decided to tell me a lie, that ovarian cysts are completely normal and every woman gets them and to go home and rest, and that there was no danger associated with them. I later found out that I could have gone into sepsis, the hospital did not check if the cyst was infected.
That same hospital told me the only thing they were going to do for me was run a drug and alcohol panel when I came in one night passing out, shaking, freezing, with a temperature and defecating large amounts of black blood. I told them I was on antibiotics and I thought I had C diff. They made me wait in the waiting room for 9 hours to tell me they thought I was just coming in for narcotics and laughed at me. I remember the face of that nurse and that was over 4 years ago. We had to walk out and travel to a different emergency room, they thought we were "emergency room hopping." They initially didn't take me seriously because they saw the notes from the previous department, I begged and cried and pleaded I told them that I was defecating black blood and just to at least look at it. I ended up storming out of the emergency room I felt like I was dying, I walked up the street fell to my knees I was having an autistic meltdown I was so suicidal and delusional from the infection that I was considering jumping out in front of vehicles I cried on the sidewalk in the rain, mentally I can no longer handle being treated this way I had already been previously neglected by medical professionals for years and finally I just had enough I thought I was going crazy. My boyfriend at the time had to come get me and tell me that they changed their mind and that they would check me out. They tested it and I tested positive for a C diff infection and they told me it was severe and that if I waited I could have died. I was treated, and yet even when I tested positive they did not do the proper protocols to keep the hospital clean putting themselves in other patients at risk. I was never told what I was supposed to do other than take medication and go home, I finally realized I'm not crazy and that for whatever reason these some of doctors just don't care.
I was told my whole life that my racing heart was anxiety, and to just not worry about it. I was forced on several mental health medications that caused horrendous side effects and true anxiety. I had to drop out of high school, stop doing my hobbies, and there were so many other symptoms present but the heart symptoms were extremely concerning. It wasn't until I was in my twenties that a doctor realized I had postural orthostatic tachycardia syndrome, high blood pressure, low blood pressure and super ventricular tachycardia. To this day I still have cardiologists ask first thing "do you have any pre-existing anxiety? Do you think this could be anxiety?" I always have to tell them, anxiety medication, meditation, lifestyle changes, therapy and so much more never changed these symptoms, what changed the symptoms for the better was proper treatment for what the disease really was. Once I started getting treatment for pots I actually started feeling relief that was tangible for the first time in what feels like a lifetime. And yet I am still questioned. It even turns out that I found out recently I have Long QT syndrome, which I was told was anxiety until I confronted them about it which panicked my team and now suddenly I've had Long QT syndrome as a diagnosis since 2018? I didn't even know it was happening since 2018, and it definitely wasn't a diagnosis I had in my chart until I confronted them about my deathly high QTc. Things like this are concerning especially being that Long QT syndrome can drop you dead in a heartbeat, but that doesn't seem to be important to anyone but myself.
One thing that changed my life was advocating for myself, which is incredibly hard to do when you are sick. Every time I go into an appointment I go in recognizing that I may get gaslit, I attempt to mentally prepare myself every single time. I read after visit summaries and notes very carefully to make sure they are not painting me in a negative light for no reason and if I find out that they had lied or put something in my chart regarding "she's just anxious" I immediately take it up with them to fix it, and always keep calm and cool but assertive and hold my boundaries. When I come into appointments I make it very clear that I don't have anxiety nor have I ever had a history with drug use and I have no interest in narcotics. When I was growing up I was shy, I was quite, a people pleaser, submissive and timid. I had people compare me to a fawn, constantly calling me cute. I refuse to bring that energy into medical settings, I am there to get what I need which is proper healthcare. At some point we need to collectively come together to fight this it's hard to do this alone, and obviously I know that from experience. If we came together and started a protest, something along the lines of stopping the mistreatment of women by the medical field, maybe they would listen, maybe the ablebodied folks who are lucky enough to only need the occasional doctor's appointment would wake up and fight with up. I look up to successful protests from history and hope that we can do the same one day.
Advocating for yourself at your doctor's appointments doesn't only make you a strong badass bitch, it makes you a hero for us all and for all the women who have lost their lives to medical negligence and gaslighting.
If you or someone you know organizes protests and has interest in women's rights and medical abuse please get in contact with me through the contact section on my website.