Trigger warning: I will be talking about gaslighting and emotion/medical abuse and neglect in this post. If these topics are triggering for you please be cautioned. I believe this is important to talk about as it is a big part of my journey and still affects me today. Gaslighting and chronic emotional abuse has been shown to cause brain damage in studies. Emotional abuse IS physical abuse. I can only imagine what it does to a developing brain.
Even though I know this intellectually, the damage has been done.My default is to not believe my own experiences. This causes me to not seek treatment (no sense in trying anyway to be honest).
I have also had my physical illness be psychologized and I do not trust psychologists or therapists which is too bad because I likely have CPTSD from the trauma/abuse. Medical gaslighting also causes PTSD.
I am still medically gaslit by 99% of all doctors I interact with. Unfortunately as a woman with many "invisible" illnesses this is so common. It's not just women/people with complex chronic illnesses. If you want to really see how prevalent this is- talk to your female friends, relatives spouses/partners and ask if a doctor has ever dismissed or minimized their symptoms. Ask at least 10-20 women (men too if you're curious)and see how many say yes. This happens to men too but seems to be the "default" for women. I do not know any women who have no been medically gaslit.
Though I say invisible illness the blue/purple legs are very visible and every doctor said I was" just cold" because "girls are colder than boys" yes these statements were from multiple doctors. This is a major sign of autonomic dysfunction (not everyone with dysautonomia gets this but a subset of patients do) Orthostatic tachycardia was also always present but was minimized as "white coat syndrome" and seen as a joke to hc providers (I still get this to this day. I do not have white coat syndrome. I worked with med students and was surrounded by white coats everyday at work for years. I was never anxious around them.)Side note: It is VERY common to have multiple comorbidities when it comes to autoimmune and neurological diseases. In fact I don't know anyone who just has one.
The gaslighting didn't just come from doctors it came from my parents (more my father and stepmother than my mother-she herself was sick with ME but believed my dad over me). It started mostly when I became ill, right at the onset of puberty. Imagine going through puberty then getting a few devastating multi -system diseases and no one believes you.
Puberty itself is hard enough, especially when you hit it younger than your peers and you are a female. Full sized breasts and menstruation at 10 years old is really difficult. Now imagine that you have a terrible disabling illness. Everytime you speak about it you are told "it's not real" "You're making it up" "it's just. part of growing up" "you're just lazy" etc by not just your parents but medical doctors.
I rarely got to see a doctor- just for an annual physical. My parents never sought medical treatment for my illnesses. I had to fight hard ot get them to let me see a doctor after I had an asthma attack in karate class so severe my lips turned blue and they almost called an ambulance. I was lucky and one of the students in the karate clasa was a pulmonary therapist and was able to help. She also spoke to my mom. My mom still thought was faking it. You can't fake wheezing and blue lips.
My parents didn't believe I had asthma because my sister has asthma. They said I was just copying her. They said the same about my motion sickness and other things both my sister and I suffer from.She's a few years older and had these things "first". I mean it's not like illnesses run in families or anything...
I had to wait until I had a job and was old enough to drive (I had my first official job at 14. Before that I worked as a baby sister for a few years) to seek medical care. By then I was already sick for 7 years.
By then it was too late. I was also punished by my father for seeking treatment.
I found out something interesting..Rapamycin has a half life of about 60 hours. It wearing off for me by day 4 or 5 makes perfect sense.
I just found this out. This is very validating. I always doubt myself and my reactions or experiences with medications or anything health related due to being medically gaslit my entire life. I started to think it was all in my head and I somehow convinced myself that it wears off-even though I was not expecting the relief I get from the medication.. This is an unfortunate likely permanent effect of consistent medical gaslighting. I do not believe my own experiences.
The main difference I am experiencing with the rapamycin is how it almost completely takes away my muscle stiffness. The muscle stiffness I experience is not normal muscle stiffness most people get. It gets worse with motion and does not subside.It is also so severe it feels like my muscles are being ripped off the bone just doing simple movements. Stretching does not help and usually triggers intense very painful muscle cramps/spasms. This is not normal muscle stiffness-it's something else.
When the rapamycin is active this stiffness basically disappears. I was noticing it was wearing off at day 4 or 5 after taking it. This is consistent with how long the medicine stays active in the human body. I do not know why rapamycin has this effect but I do know it has anti inflammatory effects so...
Rapamycin does not seem to affect my other main source of pain-the flu like all over muscle soreness and joint pain.
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When everyone around you tells you that you're "crazy" you start to believe it. I had no idea that I was actually truly sick for years, decades really. I though somehow I was making it up and didn't know or was just being dramatic. Funny because I had to learn very fast how to fake being well. I never faked being sick. I just hid my sickness from others. I still do.
Society expects unpaid labor from family to take care of sick/disabled people. My story is not unique. Even folks who were not abused as a kid are often cast out of the family /abandoned for being ill. Friends also disappear as soon as chronic illness hits. It seems like about 60-70% of the people I know with chronic illnesses/disabilities get little to no family support.
One other thing I want to say on the subject please please please do not judge people for familial estrangement. Most of the time it is adult children of abusive parents that have to leave the entire family unit. Abuse doesn't happen in a bubble. My parents were enabled and not one adult in my life stood up for me or asked any questions about my well being. Most of the time abusers already have started the smear campaign and lies about the abused for months/years before the abused can seek help.
I did not abandon my family though that is the narrative they still go with. They abandoned me as a child. I escaped the abusive environment as an adult-a disabled adult. I can't tell you how difficult it is to have to walk away from your entire family due to abuse. It is so hard and takes an enormous amount of strength. People who can manage to escape abuse should be admired, instead the are often ridiculed and judged harshly-often times more minimization and gaslighting.
I lived most of my adult life in poverty.No government assistance. No help or treatment from doctors. People still judge me for my estrangement.
I am being open about this because so many people are in this situation and carry around guilt and burdens that are not theirs. If you are reading this. I believe you. You matter. You are stronger than you realize. You are not alone. ❤️🦄
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I wanted to talk about changes in my hair /skin in this post but it is already so long. I will make another post about it because it is interesting. I am not sure exactly why my hair is growing out fast and shiny but I do have some ideas. My skin looks fabulous too.
Thanks for reading. This was a long one but important. If I can help one person understand even the basics of this post or help one person feel like they have another to relate to- it was worth the energy to write this.
Be kind to each other. You never know the hell another person has gone through/is going through.
Please feel free to share this post if you believe it will help others.
