On dealing with the aftermath of a traumatic childhood and medical misdiagnosis

Over the last few years, I’ve often told a friend of mine: “I don’t think I’m going to make it to retirement this way. I can’t keep doing this”. And yet, every time, I keep doing the same thing over and over, expecting different results.

Getting my Master’s degree certainly wasn’t a walk in the park, but I got through well enough. The coursework itself wasn’t the issue, I got pretty good grades. But I struggled with my identity, with social interactions, with sound sensitivity, emotional sensitivity, physical sensitivity, with severe nightmares. In hindsight I had severe flashbacks from the violence in my childhood home, and I had these daily. Also, I had learned, deeply ingrained in my belief system and behavioral patterns, that other people only want to use you for their own emotional regulation and that you must always sacrifice yourself for the benefit of others. I obviously was terrified of people.

I never feel good enough, I am hyper sensitive to what others are feeling, I am chronically unsure of myself, deeply insecure because I never experienced unconditional love and I struggle tremendously in my work

I have sought out counseling many, many times. In 2007, in my third year of university, is the first time I reached out for help. I was struggling with overexcitability and severe trauma. But no therapist was ever able to see the extent of the emotional abuse that I had suffered. My identity, sense of safety and ability to socially interact were too damaged. My abuser practically owned me and lived in my head 24/7 rent-free. I cried in therapy, so much, but was unable to provide the words to accurately describe not only my pain but also the root cause of it. My therapist urged me to calm down. She undoubtedly thought that she was helping me, but she was one in a LOOOONG line of therapists who focused on pushing away my negative feelings and changing my outward behavior. They didn’t know how to provide comfort to me, or soothe me. (And by extension, teach me to soothe myself.) This was a retraumatization: Again there was no room for the real me. They didn’t have enough (personal) experience with the issues I was dealing with, to properly help me. They didn’t have the skills to figure out what my real problems were. They didn’t recognize that I would dissociate at the drop of a pin and would start running my old software: doing everything in my power to appease the other person. And I couldn’t tell them, because the fact of the matter is I didn’t understand it myself.

I grew up in a family that was severely dysfunctional. Everyone must have, on first contact with any of us, immediately felt that something was off. And yet, nobody realized the extent of our problems. Except the neighbors, I think, who, to me, seemed very frightened and concerned whenever they interacted with us. They moved house, I’m sure because they were trying to raise two young children and all the next-door screaming every single fucking day was ruining their peace of mind. In school, in our direct family and among friends, nobody really saw it. I had been a shock absorber and had compensated for so much of the mental illness in the family that I became severely ill myself. Mental illness is contagious. (So is mental health, which is why it’s recommended to spend time with people who are happier than you!)

I have developed a fearful-avoidant attachment style. No, nobody diagnosed or realized it, I found out myself after years of reading books and websites. I also have a copy of my medical file and with the information I’ve gathered now, I can now clearly see that, even though there was a lot missing in that therapy, I was slowly attaching to my therapist. My file says that at the time I was following group therapy, I was calling my therapist to make separate appointments with her. They berated me, because we were not supposed to have any private sessions anymore, everything should be discussed in the group. No one realized that I was exhibiting serious attachment disorder and that me reaching out to her was a sign of a desperate need for safety and connection. They wrote down in the file that I was upset at being berated. For a group of therapists who recognized nothing of my serious issues, the fact that they noticed I was upset, is a signal that this was earth-shattering to me.

I didn’t have the vocabulary to accurately express that my brain has grown patterns from years of maltreatment that are harmful to me. I was unable to point out whenever a therapist behaved in a way that confirmed my unhealthy belief system and made me more ill rather than better. In short, they didn’t understand what was going on with me and didn’t connect with me at my pace, my intensity and my level of emotional development. During each of these therapies, I learned nothing new about myself. Or maybe I did, but none of it really landed at an emotional level… The things I had read and was trying to tell them were dismissed at that time, but turned out to be correct years later. I received well-intended, but very bad therapy. These therapists had severe blind spots and my clumsy attempts at expressing myself for the first time in 23 years were frowned upon. More misunderstanding.

In the aforementioned group therapy, I once bawled my eyes out because a fellow young adult stood up for me. I don’t remember what had happened. But he understood what I was feeling, even if he couldn’t find the words for it either. The therapists didn’t have a clue what was going on.

I did the exercises therapists asked of me and forced myself to show the behavior that was supposedly ‘healthy’. That’s what I was supposed to do. You follow the rules they set for you and then you must be better. (Hint: It doesn’t work and your pain and anger finds a different way out.) I wanted to get better. I wanted to be better. Not getting better was failure.

Don’t get me wrong: They tried to help. They meant well. They truly thought they were helping. In that sense they are like my mother, who has no clue what others want or need, but just pushes her well-intended advice, gifts and optimism onto you. So at the end of four years of intermittent therapy, every time they sent out a letter to my doctor that I was doing better, they had only fixed the paint job… I still had: four flat tires, a broken engine and a shredded, violated interior full of trash and cigarette butts and a deceased dog in the trunk. And somehow, that engine still came to life and by my sheer willpower, I made that care move even though it was on fire.

None of these therapists ever asked me why I was struggling so. I matched criteria after criteria of suffering, struggling and dysfunctional behavior. Anxiety, depression, skin picking, obsession with weight, cancer phobia, emotional dysregulation… I expressed that I recognized myself in Stockholm syndrome towards my father. I was frowned at and the topic was abruptly changed. I said “Can I do an IQ test? Something’s up with me.” and the man across me looked at me in an annoyed manner and said: “I don’t think so.”. (Guess what? I scored 127 on a Mensa test years and years later.) I cried and said “Everyone knows the secret to a happy life and they haven’t told me!” The therapist replied “What if there’s no secret?”. Effectively, she slapped me in the face. This is where she hurt me beyond belief. She and her colleagues knew nothing, truly nothing about what severe emotional abuse does to you.

My “level of functioning” was deemed good. My GAF score was set at 70 but I was suffering deeply.

It’s at graduation and while working for several companies that I started feeling the strain. In hindsight, it may seem like a flippant thing to say, but… I have to do things at my own pace, in my own way, the way I want and need to do them, to be happy, healthy, productive and successful by my own standards. And the difficult part is I often can’t feel what my pace, my way and my needs are. Even among teams of kind people, in a healthy corporate culture, I struggle. Right now, every move that a human being makes (including me myself) is a trigger. I am suffering from severe PTSD, and yet no therapist with authority to make diagnoses has ever recognized that this is the case.

While I was fighting for my life in 2019, I went to a therapist who refused to believe that I was seriously physically ill, who belittled me instead of offered me the support I so desperately needed. And instead of walking away, I stayed. I stay in situations that are harmful for me. And I didn’t ask my friends for help. Because I was terrified that they, too, would get angry with me, just like my boyfriend and healthcare practitioners in response to my complete emotional breakdown during this whole ordeal. I asked one friend. He tried to support me and went with me to get an MRI scan done. But, because I didn’t tell anyone what I was really feeling in my body, what I am now fantasizing about and wishing I could go back in a time machine, didn’t happen: You felt an abscess rupture in your body!?? What the fuck, get your ass to the ER and say that! I’ll go with you and I’ll make you say it! The year 2019 was a perfect storm, with layer upon layer of accidents and mistakes, both from me because I got stuck in old trauma and failed to communicate clearly and honestly, and from my obgyn’s office, who should have recognized that TOA ‘s can grow slowly and have ‘silent’ symptoms. They saw a cyst on ultrasound and I reported symptoms of an abscess as well as ARDS, but they didn’t put one and one together. The most annoying thing is that physical issues can manifest as mental health issues: I had been having panic attacks from the cortisol spikes caused by the bacterial infection. I had treated those as mental health issues, rather than a symptom of physical health issues. I dismissed my subconscious, that was shouting at me that something was wrong in my belly. After all those years, still believing that I am flawed and unworthy, I dismissed my own internal compass, that was steadily pointing the way.

My mental illness has now, in fact, become way way more than a hindrance. I have severe flashbacks. I am more terrified of people than I have ever been. My whole body fucking hurts. I have a pattern of invalidating myself, all the fucking time. It is fucking awful. Part of me is going over and over through the story of “I’m going to die one day because I can’t communicate!”

So, now what? Part of me is sick and tired of having to climb that mountain again. Not again. Fuck. I’ve worked my fucking ass off from 20 to 33 yrs old. I thought I had made it. I was happy! I’m 35 and we’re back at square one. Or are we? No, we’re not. I know more about myself than ever before. I have identified two main things in my life that need addressing.

First of all, my flashbacks and “amygdala hijacks”. My body can’t handle any stress right now. Everything that startles me or reminds me of the horrible miscommunications while I was sick, triggers me. My entire body hurts, I have been crying every day for months and my entire operating system shows a blue screen and this sound over and over again. I am exhausted and overworked.

I’m not very spiritual, although I’d like to be. I’m of the conviction that everything is physical. This is a physical illness first and foremost. The brain is a physical thing too! My need to talk about it is real, I’m a woman, I have to talk it through or I’ll be all twisted inside and it can help me to get better by expressing the things that are bothering me. But I also need to apply myself, to bring my body back to a regulated, calmer state. It will take a long time, because I spent about six weeks in constant extreme stress and fear for my life and have spent the past 10 months in a continuous state of dissociation and flashbacks. A knife has carved a new track in my brain and nervous system and I’m stuck. I need to give my body everything it needs, to calm down so that this track in the snow can be flattened again. I have also sought mental healthcare again. Even though I have lost faith in mental healthcare, after 10 months of trying to move on as if nothing happened, it’s clear I’m not getting out of this without help.

Secondly, I am yearning for validation of what I went through, for understanding. I want people to know how often it happens that they show the slightest disagreement or discontent and that I immediately collapse like a card tower. I want people to be more aware of my broken bones. I am unable to acknowledge my own part in this. True, I didn’t choose to have these brain patterns. I didn’t have much of a choice but to respond this way. So I should not berate myself over and over again. But the flip-side is: it’s useless to expect validation around every corner. The story I keep telling myself is that other people need to reincarnate to the moment I was born, see everything I’ve been through, and then be as upset as I was at what happened to me. And then I will be allowed to freely talk about it. Only then, can I lay it to rest…

I need to stop telling myself the story: I need to convince others to feel my pain before I’m allowed to acknowledge it for myself. Nobody will ever know what it is like to be me. I also need to stop expecting that others will come to the same conclusions as I did, if I don’t share the information I have! Instead, I need to seriously learn to express myself, regardless of what I fear other people think of me (or even regardless of what I know they think of me). I need to express my feelings, my needs and wants. I’ve been through a lot, but instead of either hiding it or fuming at the lack of understanding, I need to dare to own the story. To write it down, without flinching or looking up to see if other people are frowning.

No more hiding. This is me.

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