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.
...
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. ❤️🦄
...
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.
@freecompliments is an amazing community here on Hive. they even have Mental Health Ambassadors to help those in crisis. You may want to check them out. A great variety of posts in the community as well. There's a little something for everyone. I have made a few online friends here and it really does help me get though the tough days sometimes.
Fantastic post! People need to realize they need to listen, and unfortunately some doctors are too dismissive of symptoms. It's horrible that your parents though you were faking and asthma attack, the blue lips can't be faked...
PTSD is very real and come from any abuse. I'm sorry you have it, it's not fun I know since I suffer from it too. Gaslighting is a horrible thing to do!
I'm glad the rapamycin is showing positive results. It really is fantastic news!
Being kind is something there is too little of in this world, so I agree everyone should make a point to be more kind on a daily basis. You really can make a big difference in someone's life!
!DHEDGE
Thank you. I have been wanting to post something like this for a while to not only raise awareness for emotional abuse/gaslighting at home and at the doctor's office. It was hard to post because these are personal stories and made me vulnerable. But I kept thinking how hearing /reding these similar stories from others like me has given me so much comfort and validation, I figured it was "my turn" to do that for someone else. Even folks who do not have chronic illnesses may be carrying guilt about family estrangement/abuse. If I can help relieve that in just one person that would be amazing.
Even in the disability/chronic illness communities abuse isn't talked about much except for medical gaslighting. Maybe I can help break that stigma even just a little.
The asthma thing hurt because my mother was gentler to me. In some ways she would try to shield me from some of the abuse from my father/stepmother.The fact that after a respiratory therapist said to her that I absolutely have asthma ,when I got home she told me she didn't believe it she thought I was being dramatic. That really hurt. Though did see a doctor that week and he confirmed yes it absolutely is asthma. I believe the dr appointment was made as an attempt to discredit me ,not get me care.
Soon after the asthma dx my stepmother kept going on and on how olympic athletes have asthma and since it's not a big deal for them I should be fine. She and my father are truly evil.
My sister has very mild asthma. She never was treated like this. They believed her right away. I had been mentioning for years that my lungs hurt a lot and breathing was difficult before this incident.
You can't fake blue/purple legs either... even if I wasn't sick I am sure I still would have been the scapegoat/black sheep of the family regardless. The empathetic children usually are in these dynamics.
I am sorry you also suffer from PTSD. It's harder than most people realize.
You are a kind soul. I appreciate you. ❤️
I'm really glad you shared your experiences, hopefully others can learn from them and be more understanding and caring people.
PTSD is a horrible thing to have, I still have nightmares frequently. Mine were more military related, but loud noises and stress can really set off a relapse. I know they are using psilocybin in some states along with a therapist to treat it, and it's something I might be willing to try. Finding the right therapist might bet the real trick since I don't easily trust therapists.
I'm sorry you went through all that, you shouldn't have had to. You are a kind soul too and you are very appreciated as well!
aww thanks 🦄
Nightmares are the worst. I am also super sensitive to loud sounds but I am not sure it all has to do with PTSD (though I have an over active startle response). I also have sensory issues and am always in"fight or flight" with POTS. I am hyper vigilant but I do pick up on toxic traits/behaviors in people before others see it and am proven right every time. I consider it to be a superpower :)
Psilocybin and MDMA are promising. I understand not trusting therapists.The last therapist I saw said I was sick because I "must be getting something out of it". This person knew I spent a lot of time pretending to not be sick. Yeah I get a lot out of having an illness there are no treatments for and no one believes is real.
Stellate ganglion blocks are something people are experimenting with for PTSD as well. It seems to help some people (no therapists required lol).
That's a great superpower! Nightmares and PTSD both really suck... We'll see how it goes with psilocybin, the government really needs to legalize all these beneficial agents.
Sometimes psychologists and therapists are not to be trusted because some are not upto the standard professional. Or let me generally say a lot of medical practitioners, they are not upto standard and they actually put a lot of people health's at risk. This is not good.
One thing I am so certainly sure of is the fact that this is just a phase in your life where you will truly overcome
HC providers need to set aside their egos and listen to patients, that's for sure.
I agree on most points, but not sure what you mean by "just a phase". I have untreated mitochondrial dysfunction, autoimmunity, autonomic dysfunction and a bunch of other stuff for 30+ years. It's not just a phase nor will it just get better on it's own.
I definitely agree that (para)medicines should listen more to their patients and not just decide based on their own opinion. Like, listen to your patient and his treatment will go much better!
Have seen different examples in several courses in different fields. By the way, it's not only the case in the medical world, but it's the same in for example sales. Listen what your client needs and you'll be able to make him a better offer as well.
Yea one of the thing I really admire about is the fact that you don't let what you are facing to limit you on the ground, you are still out there flowing with life and interacting with friends and that is to show how strong you are. You are really a strong man and a fighter and I believe you will overcome all this hard time you seems to be facing right now
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