My friend finally was to write her story of abuse under the guise of healthcare. She was very much on the fence about letting me post this. I told her that she would only get support. This is what she wrote:
*** WARNING: TRIGGERS ***
This narrative is taking me 4+ months to write due to it being triggering. I am also very embarrassed by telling my story because I am strong and fearless in EVERYTHING except medical encounters. Because most people have not experienced what I have, they have no problems with healthcare, do not believe that my fear is real, and just tell me to “get over it.”
Recently I have come to terms with the fact that I am dealing with PTSD symptoms that I trace back to a February, 2018 event. Let me give you some background:
When I was 5 or 6 years old, I had an accident with an air rifle that I needed stitches for. I grew up in a rural environment. From a young age, I would take off down to the "back 40" or off into the woods for hours. I also played with things you could not imagine giving to a child today (like an air gun). No helicopter parents like today. When I was injured, I was taken to the local hospital ED. (I could just imagine what the the ED staff thought of such a situation.)
My mind had blocked the memory of the visit to the emergency department and although I do not remember what happened (I do NOT want to know why happened either), I do know the feelings that I experience with anything medical.
Through therapy, desensitization, hypnosis, and meditation, I accept SOME things about the experience (that I really do not want to remember); I was forcibly stripped naked and kept that way for the examination and procedure. Some of my abusers were female nurses.
I wish that I could write more about this event because it is in the top 3 things that have shaped my life. There is a reason that the mind blocked out this event.
My next memory is having to go for my first school physical. I crawled under a library table that we had encyclopedias on, terrified, I grabbed on to the leg for dear life was crying and yelling I did not want to go to the doctor. I was terrified.
After that, a close relative, a physician, took over all my medical care. If I needed a form signed, my parents sent it to him. Infection, he called in an antibiotic. I remember once I needed an immunization and he brought the needle in a cooler when he came to visit. This was all completely normal to my entire family that a child from the age of 6 never went to a doctor for ANYTHING. This lasted into my 40's when he retired.
This only validated what I believed happened to me. My family never spoke about what happened to me, and I will NEVER ask. I also have somatic feelings in my body whenever I had benign medical encounters (such as a soar throat).
I am healthy and I also ignored many problems that people would normally go to a doctor for. I have NEVER had a complete physical exam in my whole life (and NEVER will allow one).
My relative diagnosed me with ADHD at age 27. I had to find a doctor to continue my maintenance medication after my relative retired because it was necessary for me to live a somewhat normal life (as much normal as someone with ADHD can have). My first doctor was a very good old school physician. I left him to go with a new, young doctor that was just starting out at a practice of a physician who was an extremely close friend of my father's (a golfing buddy among other things).
This strategy allowed me more control over this physician due to my father’s relationship with his friend (who also was a board member of the healthcare system). He was promoted to a facility administrator and the patient roster was given to a South Asian physician (who went to medical school in Bangladesh) that the healthcare system brought in. He was horrible; he was good at telling, but not listening.
There was an issue of English as a second language (ESL). He also did excessive testing and referrals (as if he was paid a commission. He also wanted me to see a psychologist about seeing if I could control the ADHD with therapy alone. I used the visit with the psychologist to get an appointment with a PSYCHIATRIST who concluded that my current regimen (medication) was the best treatment.
He also diagnosed me wrongly with hypertension (high blood pressure) and prescribed me blood pressure meds (along with all the unnecessary lab work that goes with them). I tried to explain that my BP was in range, that this was just "White Coat Syndrome" caused by my extreme fear of anything medical. He held my ADHD meds (which I needed) over my head to force me to comply with the unneeded BP treatments.
I had the psychiatrist forward his findings. Six months later, he was pushing me to see the psychologist again (despite what the psychiatrist stated. I realized he did not care about me, just how many referrals that he could generate. He then attempted to cross my boundaries that made me feel safe, so I went back to the old school physician.
I have always had an intense fear, rising to the level of a phobia with anything medical or dental. I also have an extremely intense fear of needles, so much so that to this day my wife holds my hand for any sticks. I even had a root canal done without novocaine because I feared the needle. I also refuse to undress anything other than my shirt. To undress for anyone for medical purposes feels like a sexual assault to my person.
I do not ascribe being transgender to this trauma. Being transgender also did NOT precipitate the abuse either. In fact I do not disclose my gender to healthcare providers (NONE OF THEIR DAMN BUSINESS). I present as a cisgender (now) alpha male. (Only my hormone provider and therapist knows my true gender.
One of my undergrad degrees was a counseling degree. The joke was people become psych majors to work out their own problems first. The two issues that I struggled with in life were my gender and my medical phobia. I was actually fine with my gender, I simply wanted to know what it was called and explore it more. My medical phobia was something that people would say interfered with my life (although I was quite content avoiding ALL medical care.
My counseling degree has been indispensable in dealing with myself. I eventually found my specific phobias: DSM F40.23 (blood, injection, injury type phobia) and DSM F40.24 (situational type phobia).
Along with my family normalizing me as a child never going to a doctor, and my feelings of having to undress or anything to do with my genitals (medically) feeling sexual/assaultive, along with my hypersexuality validated my suspicion that I was abused in the ER at age 5.
This started in grade school, shortly after "the event." My childhood playmate introduced me to sex (I suspect that she was a hypersexual). Ironically I could play at a party with multiple partners, but would refuse to allow a rectal exam by a physician because it would feel like a sexual assault.
In the 2000's, I started self-prescribing my regimen for transition with black market hormones and blockers. No blood work (every 3 months), no invasive physical exams, no needless psycho therapy. I had NO PROBLEMS and started an anxiety free transition. This was only further avoidance.
I had my healthcare situation under control until February 2018 when I contracted an infection causing cellulitis in my finger which did not respond oral antibiotics. My old school doc insisted that I go inpatient for IV antibiotics. I did NOT want to go inpatient. I had NEVER spent a single night in a hospital. IV antibiotic infusion could be done at home with a visiting nurse (even every 8 hours). My doc's concern was getting the antibiotics started as soon as possible, he wanted me to go through the ED to get them started as soon as possible.
Against my better judgement, I trusted him. I knew in my gut that I should not go. I did NOT listen to myself.
The 2017-18 flu season was the worst season since since the 2009 flu pandemic. It had an extended period of high activity during January and February (2018) nationally, and remained elevated through the end of March. The hospital has never had their ED so full. I sat in the ED for 12 hours. The IV nurse had gone home sick.
When I got in to a room, there was no IV nurse available, so my assigned nurse (with his license to practice less than 6 months) attempted to insert the IV line. After (at least) 10 minutes, multiple attempts at 3 different locations (with the same cannula), my wife finally stopped him when he was twisting (probing) the cannula at the elbow point. It was a "fight or flight" moment and I chose to "freeze."
I also felt claustrophobic, the staff denied me to take a shower until my doc approved it. I felt trapped. I asked my doctor to prescribe anti anxiety medication for my stay and for one week after. I was only there for 5 days.
To keep my sanity and regain control over my life, i would regularly take walks outside (off the floor). I even went downstairs to visit a relative who happened to be having surgery the same time that I was there. On the last day, one of those "med cart pushers" sees me coming in from the outside, IV connection hanging off my arm and reported me to the head of the floor.
I was confronted by the floor head (and her clipboard) an my day nurse. I was told I was not allowed to leave the floor, blah, blah, blah. I was taking back control and said that I am requesting an accommodation under the Americans with Disabilities Act (ADA), that I go outside.
Both of them did NOT know how to deal with the ADA. The clipboard just rolled her eyes, went back in her office, and just left the nurse standing there with a confused look on her face.
I got out on a Friday. I was a mess. Saturday morning, February 3, I was suffering PTSD, an emotional hangover, and depression. I had to do an emotional reboot. The most dangerous thing that I could come up with was a solo canoe trip down the frozen Susquehanna River.
My doctor was also started repeatedly, forcefully pushing colonoscopy despite my refusals. This made me feel threatened.
After getting out, my doctor was ordering blood tests every 6 months, NOT for anything related to my health, because his EMR (electronic medical records) system was was a poorly designed system and he did not know that he prescribed the previous blood work.
During one of the draws I had a phlebotomy student and the blood draw went horribly bad. Again my wife stopped her and another senior person had to do the draw.
I had constant anxiety about the upcoming blood draw. Even when I got my blood taken, later that night I was worried about the next blood draw. I was constantly having:
- Intrusive memories, flashbacks, upsetting dreams about the traumatic event, emotional distress to things that reminded me of the event.
- Avoidance, trying to avoid thinking or talking about what happened, and totally avoiding healthcare.
- Negative changes in thinking, anger at the profession of medicine, feeling detached, lack of interest in activities once enjoyed and feeling emotionally numb.
- Arousal symptoms, aways being on guard around anything medical, self-destructive behaviors, trouble sleeping and concentrating (due to intrusive thoughts), guilt and shame.
I have told my doctor all of this, even wrote it out on paper and handed it to him. NEVER any discussion about possible PTSD, it never made it into my medical records, no apologies for what happened to me, and he continued pushing colonoscopy.
My doctor is actually a very good doctor. He is old school. He is very good with physical ailments and injuries. I TRUST his therapy recommendations and I TRUST him. (I just need to decide what is best for me.) Like all other providers, he believes that acceptable healthcare practices can NEVER be traumatic as long as one wears a magic stethoscope or magic white coat.
Prior to 2018, I was doing cognitive behavior therapy (CBT) to desensitize my self to everything medical and deal with my phobia. I was shamed and bullied by everybody (but especially by those who worked in healthcare) because THEY had no problem going to the doctor, so they could NOT understand how I could have problems.
The events of 2018 undid any advances that I made with CBT therapy. Even worse, the inpatient IV infusion VALIDATED the fears and beliefs that my phobia sparked. It was no longer an irrational fear; it has been validated and rationalized.
I took control of my life back.
After the 2018 events, I started flushing my BP meds. I told my doc that and gave him a journal of my daily BP taken by my wife showing a normal BP and proving White Coat Syndrome. Since I was no longer on BP meds, blood work was no longer required.
In 2019, I took my "doctor's orders" for blood work and threw it away. The next visit, he asked about the blood work and was going to order it again. I put my foot down and told him about the anxiety I had surrounding it, so I was no longer doing blood work. I also told him that also due to the anxiety, I was no longer doing ANY preventative care. The only thing required for my ADHD meds was to monitor BP.
In 2019, my best friend (and my medical hero because she is not afraid of ANYTHING medical) began encouraging and supporting me to take better care of my health by doing preventative care. Most recently she has been trying to get me to do regular blood work and a colonoscopy.
I agreed to do these things for her. Within one month, she went through two of my ultimate nightmare medical procedures. I do need to be in the right state of mind. Right now, I am fragile, and if one of these goes bad, I will walk away from ALL healthcare forever.
I can die with dignity, but I can NOT live without it.
In my 20's, I did something stupid and was facing sure death. I went through all the stages of grief. I finally accepted the inevitable. I closed my eyes resolved that I would never open them again. Shortly after, a knock on the window. I was saved. When you accept your death, it changes your thinking FOREVER. I no longer FEAR death. (Note: I do not want to die and do NOT "idealize" suicide.) (Emotional) threats of dying from fear of colon cancer have no effect on my decision making.
2020 was the worst year of my life. The pandemic hit and the psychological harms with isolation came with it. My 28 year old friend (and sub) was found dead in a motel room in New Jersey. (As of writing this, the corner has not released a cause of death.) She was board because we could no longer go clubbing in NJ and NYC. She fell in with the wrong crowd who continued to "party."
I also came out to my family. My parents took it the hardest. They were emotionally abusive and threatened financial abuse. (I am going to enjoy the day that I put them in a home.) We have since began to reconcile. My tech company that I built from scratch in 2010 died. Due to regulatory issues (on the part of my biggest client), my contract was not being renewed. I had to spin up the staffing company that I started in 2019. Being in this industry over 20 years, I know that a deal lasts ONLY 2-5 years.
I started doing a support group in order to begin dealing with the anxiety. During one of the support group sessions, the psychologist who moderated the group bluntly said to me, "You are exhibiting symptoms of PTSD, have you thought about doing therapy (specifically) for PTSD?" I knew that he was right. A month later I emailed him and asked, how do we start?
I use to deal with my problems by avoidance and crushing the feelings and memories down to a little pea and throwing the pea in that closed in the back of my head. All the stressors that I had to deal with in 2020 was like the cartoon where the character is trying to plug the leaking dike. Eventually all his fingers, nose, and toes are plugging holes and new holes continue to appear.
Up until 2020, my strategy to deal with my anxiety and PTSD was working fine. I had too much stuff to deal with and the symptoms of PTSD began to show. Even worse, what was (I was being convinced was) an IRRATIONAL FEAR was VALIDATED. Treatments for phobias will no longer work.
What causes PTSD is the loss of control that people experience during traumatic events. This "soft" trauma (not remembering exactly what happened to me at age 5) caused my phobia. If you look at the symptoms and causes of phobias and PTSD, they are almost IDENTICAL. The real difference between the two is the intensity (of the trauma and the response to the trauma).
In ALL other aspects of my life I am fearless, actually a thrill seeker. When it comes to anything medical, I fall apart and become a real mess. I have compartmentalized my PTSD only to anything dealing with healthcare or medical related. My wife and best friend know me as a strong person (physically, emotionally, and mentally). They feel safe when I am around, and this is the person they got to know and love. (I am sure that many others feel the same about me.)
My best friend convinced to have a real provider involved with my hormone regimen. I agreed. I invoked the Americans with Disabilities Act (ADA), requesting the accommodation that I do not do bloodwork. All the centers and practices that I contacted did NOT even bother to respond back, except one.
She went with me to my first appointment (and will go to subsequent appointments) with me. A nurse came in and thought he was going to do a blood draw (standard operating procedure). He was aggressive, TELLING me what he was going to do and kept pushing it despite my refusals.
I felt threatened, was frightened, but then I chose to FIGHT. With clenched fists, stood up and YELLED ant him my refusal. The nurse practitioner came in and did the usual listening to heart and lungs, BP, and we talked (history). The only requirement for the prescribing was her to palpate (feel) my liver to make sure that it was not enlarged.
At this point, for the "exam," I broke down and was a mess. My best friend saw the mess in the lead up to the appointment. She did not recognize me as the person that she knows. She could not believe the fear and anxiety. She does NOT like that weak person.
So many people don't understand how I can be afraid of doctors when THEY (themselves) have no problems with doctors. I was CONDITIONED at age 5 to fear the profession of medicine. What happened to me at the age of 5 was the equivalent to a gang rape. The worst part was that it was (and to some extent still is) an acceptable medical practice.
Let me demonstrate another acceptable medical practice, read this:
WHY DOES THIS HAPPEN STILL IN 2021?
Look at the responses nurses give to a similar situation:
When I first started in the ICU, I was pretty bad at IVs so common advice I got from other nurses was to try on sedated, vented patients LOL. So I can see why the nurse asked you guys to try.
This is exactly the attitudes that allowed me to be abused (twice by doctors and nurses.
In 2013 I met Archie Banterings, a patient advocate from Philadelphia. He taught me how to advocate for myself in healthcare. He showed me how to use the ADA to get the healthcare that I want and deserve.
I hate that when I say that I am not doing preventative care and that I avoid healthcare that all I get is shaming and bullying. Some people are more understanding when I say that I am an abuse survivor. All that does is REVICTIMIZE and RETRAUMATIZE me.
Why do I have to disclose this? Is it NOT my body and do I NOT have the right to live my life my way? Am I not the customer when I consume healthcare and do I NOT have the right to choose the healthcare that I want?
Many people refuse to disclose that they are survivors to avoid revictimazation. As I have dealt with the other "holes in my dike" I am seriously considering quitting therapy and going back to crushing trauma down to a pea, TOTALLY avoiding healthcare, and lying that I am receiving healthcare.
I wore as a badge of honor the fact that I never stayed in a hospital overnight and I never had psychotherapy. My doctor talked me into it and I trusted him. I feel like the girl talked into giving up her virginity to a guy that says "trust me," "I love you," "I want to be with you," etc.; and he "dumps" her shortly after.
It is not outright rape, but I feel that I was cheated, not listened to, and just hurt. Adding insult to injury, NO ONE ever apologized for what happened to me. Something was taken away from me and nobody in the (so called) compassionate, altruistic profession of medicine even cares.
The pain was so bad that I gave in to the recommendation of doing therapy. I feel weak, like a failure, guilt, pain, and shame over doing therapy. I worry that I am receiving care in place of someone who really needs it. Again, this was taken away from me.
I want a female to hold me while for a whole night while I just cry and get these bad feelings out of my system.
The women closest to me that would support me in this, I cannot ask ask them because they know me as nothing but strong. I hold them when they cry. I would be a complete stranger to them. They also do not tolerate poor-me, whiney people and I am afraid that they will see me that way.
I have asked my best friend NOT to read this. I am ashamed that I feel this way.
Having worked with people who have been severely abused, I feel that I have not been "abused enough" to have PTSD. This is probably from being gaslighted by so many people.
I got through most of what happened to me and where I am at. I got through this finally. It has triggered me, but it is done.
I have an extremely high tolerance for pain. (Try having your nipples pierced.) It is not about the pain, it is about the control that was taken away from me. Sure I can do blood draws, even if painful. That is not the point, it is that as long as the profession of medicine pushes these, I will REFUSE. I am in control of my life and body (again). This is about survival for me.
Update 2021-04-26: I have also made advances in my therapy for my medical PTSD and medical phobias. I am logically ready to do blood work, but the hurt, fear, and anger are holding me back. They make me afraid to heal and be strong again. (Ironic...)
Thank you for reading.
