It doesn’t happen that often anymore, but one place where I almost always get triggered with my Childhood PTSD symptoms is when I visit the doctor. I could never even put this into words before. But now that I’m mostly healed from my Childhood PTSD symptoms, I want to express what I wish my doctors – all the doctors of my life – had understood about the effects of Childhood trauma, about me.
Note: This is one of my most personal posts ever. Unless you’re someone who really prefers text, I recommend you watch the video, so you can feel the “tenor” of it. I often think these transcripts sound a bit glib.
Now to be fair, there’s a reason why my doctors didn’t understand. The true scope of the adult effects of early abuse/neglect were really poorly understood by everyone until recently. There’s still so much we don’t know. so no one could know what it was exactly, or how to to treat it.
But this is a fact: Every time I needed healthcare, my trauma played a role. Either it made me sick in the first place, or it kept me from healing, or it made it really challenges to care for myself.
The classic signs of complex trauma were all there — headaches and stomach problems when I was a kid, and then more serious things as I got older. I don’t think I was an easy patient a lot of the time. I often didn’t have insurance or good care, and the providers were always so busy and I was so prickly and intense.
So I can hardly blame them (most of them) for not really listening. Or for offering advice that was off the mark.
A NOTE ABOUT TERMINOLOGY: If you’re new to my story, I use the term “Childhood PTSD” as a more specific way of talking about Complex PTSD, or “CPTSD.” That’s the kind of PTSD that comes from chronic exposure to extreme stress and trauma. It’s a little different from the acute kind that we associate with (for example) combat-related PTSD. Most people with CPTSD developed it as kids, and obviously, not all kids exposed to trauma develop it. I like the term “Childhood PTSD” because virtually everyone knows what I’m talking about. It refers to the ways we’re affected long-term — the ways we still get neurologically triggered as adults — by what happened to us when we were kids.
When I’m triggered it’s really hard for me to express myself, but I can express it all NOW. So I want to say, with the strength and clarity in me that comes from my healing, what I couldn’t say when I was struggling with my trauma symptoms.
To the pediatrician I saw when I was eight, when my mother’s friend’s parents made her take me in, and I was dirty and dehydrated and so sick with a fever I couldn’t even sit up: Thank you for the antibiotic. You saved my life. But… I wish you had asked more questions about what was going on at home. How is it that the grownups left me with a fever for two weeks without seeing a doctor, or getting a change of clothes? When my little sister came into the room with us, did you notice her dirty fingernails were nearly a centimeter long? She was only three! Those infections on her skin were from scratching her face.
And I know how hard it can be to connect what you’re seeing in children, with a mother who is so smart and pretty and friendly and funny. But you’re the only outsider who’s going to see this, and we’re counting on you. I know you saw that she was drunk or high; it would have been hard to miss. And maybe that’s why you asked if everything was OK at home. Thank you for asking that! Thank you for trying! But don’t you know I was forced to say it’s fine? She was standing right there! And I wanted you to think that everything was fine. I was lying. I was afraid I’d get taken away from my mother if anyone knew what was really going on.
I wish there were more ways to help families without taking the kids away. And I wish you’d pressed a litter harder, or followed up, or at least let me know that you knew, and maybe, that I could talk to you.
And then there was the family planning clinic when I was in eighth grade. I know you wanted me to feel safe and respected and feel that I could trust you, and think of you as my cool friend. You treated me how you would want to be treated. But you were an adult and I was just barely fourteen. Something was really wrong with the picture.
I’m sure you wanted to do whatever was necessary to help me avoid pregnancy, and I thank you for that. But I needed you to help me. No one ever asked me what was going on, if I was really OK or safe. I wasn’t OK. And I honestly expected when I came to the clinic that people would ask me about that! I was really nervous about it because I thought you might try to intervene.
But no one intervened. No one asked. No one said “Hey, you don’t have to do this!” Or “Hey, you’re too young for this… and that guy is trouble and he doesn’t care about you at all!” But there was no one to check in with me on that. I couldn’t talk to my mom. I was fearing but also hoping you’d open that conversation with me.
I’ve always tried to look normal at the doctor. It’s just a habit. I look up to you doctors. As a young adult I was afraid all the time that people were thinking I was trash, and so I’d dress up a little bit to go to the doctor. As a younger adult, I always felt the need to hide what was going on in my life – the chaos, the relationship problems.
So I want to tell my doctors now: Please don’t assume just because I have clean clothes on that everything’s fine. Don’t assume that just because I look middle class that everything’s fine. And please don’t assume that because I’m white, everything’s fine — just like none of us should assume things bad or good about people’s lives because of their race or socioeconomic status. Every person you meet is different. We have each have our own story, our own problems, our own strengths.
A lot of us who had a rough childhood, we’re good at hiding what’s really going on. Some people try to act tough, some people try to act cheerful (which is sometimes just a way of acting tough). But just remember that we’re trying to blend in. I always tried to look competent and agreeable, and would have pulled it off almost all the time except that the agreeable part was really hard to maintain!
I’ve done it and I’ve seen others do it. We’re so nice, and then bam, there’s this big, occasional burst of pure, mean unreasonableness. I’m sure you’ve been on the receiving end before. But just so you know, we’re not doing it to give you a hard time. It’s a brain thing.
It’s a brain thing.
When crazy stuff was going on at home, I was so afraid I looked crazy… or poor, or stupid. And I was afraid if you saw me like this, you wouldn’t help me or listen to me. So I tried to seem “important.” I know it just came off as angry or arrogant, but honestly, our discussion had just brought up a lot of pain and my brain and emotions were dysregulated. I couldn’t pull it back. Can you see why I was trying to put on a nice face? I was embarrassed about being broken like that.
Even now, when I’m too distressed inside to hear a word you say, or to remember how to to take a medication, please don’t assume I don’t care, or label me as noncompliant (and maybe this is my pride speaking), please don’t assume I’m ignorant. My brain just does this when I feel stress. I get dysregulated. I feel numb and can’t think straight and I get clumsy and overreact to things.
So can I tell you what to do when that happens? Just hang out with me. Be present, give me a minute even though I know you don’t even have a minute. Let me know that you see me and you hear me and you believe me about the little things I tell you. And then maybe, if that goes well, I might feel like I can tell you the big things.
A couple of years ago, when I was starting to develop a presence online with my Crappy Childhood Fairy blog, I got this idea how GREAT it would be if I could have a primary care doctor who knew about the effects of early trauma on health, and then I’d finally have a provider who understood the way my ‘stuff” can generate health problems, and the way my healing can do amazing things to improve my health. I keep having miracles!
I’m not a doctor or therapist but in the last few years writing and making videos for people with Childhood PTSD, I’m more convinced than I was when I started that it’s really possible to change our lives in powerful ways, using what we now know about the adult affects of abuse and neglect in childhood.
Yet I don’t think healthcare, as a whole, is keeping up with this. So it’s really important that those of us who have experienced childhood trauma and suffered with it and found a way to heal (despite a huge lack of effective professional help) have a place at the table. We need to be there to inform the direction that this new awareness now takes our entire healthcare system, our culture, our way of life.
In case you’ve never heard about it, I want to make sure every clinician and social service professional knows about the findings from the ACE Study. The survey developed for this study has become a kind of a standard measurement of what are now called “adverse childhood experiences,” and they’ve helped identify how these experiences corrollate with our physical and mental health throughout our lives. Do you know about this study? It was created back in the 90s by a couple of doctors, one from the US Centers for Disease Control, and one from the Kaiser Permanente.
The ACE study was based on a survey with ten questions about what you experienced as a child, along the lines of abuse, neglect, exposure to violence and addiction — that kind of thing. Those are the adverse Childhood experiences — get it? ACES?, and your ACE score is how many out of those ten actually happened to you while you were a kid. I put a link to the survey below if you want to take it.
And so the original researchers, whose names are Robert Anda and Vincent Felitti, discovered that the higher your ACE score, the higher the probability that you’ll have a whole slew of health problems. There are the problems we always kind of knew were connected to a rough childhood — things like depression, anxiety, smoking, substance abuse, involvement in relationships where there’s violence and that kind of thing.
But they also found out about a whole universe of problems that we didn’t used to know were connected to childhood trauma — obesity, diabetes, ADHD, memory problems, heart disease, lung diseases, reproductive disorders, cancer, skin problems, gum problems, chronic pain, problems with the nervous system and tissue healing and blood flow and hormones and like… in what way doesn’t Childhood PTSD get in there and increase our risk of everything bad?
Without a doubt, every health problem I’ve ever had is very, very “ACE-y” — autoimmune stuff, migraines, asthma, chronic pain, and a stretch of years of my life where I had more than a dozen major surgeries, following which, for reasons no one knew, I just could not heal. Each surgery left me even more damaged and it was a mystery! Not fun! Totally terrifying!
And I think it was after surgery number 12 or 13 that I happened to find out about ACEs and Complex PTSD. I was working with someone who worked on ACEs, and then I read a book, and then I met a practitioner who worked with homeless veterans, and one night when I was by myself I kind of figured out the piece of the puzzle that had always been missing — the part that connected childhood trauma, with certain quirks of mine that I thought were personal failings, and I realized I had likely been suffering all my life with brain and nervous system dysregulation.
And I also realized that I had known for years how to re-regulate my brain. There was a writing and meditation technique a friend had shown me that had pulled me out of the worst depression in my life, and sometimes I’m slow to learn, but I had actually given up the practice after ten years or so and couldn’t figure out why my life and my physical health were spiraling down. I thought it was basically because I sucked at life. And I thought I sucked so much I didn’t even know that I sucked. This is a Childhood PTSD thing: Except when I’m blaming other people, I always think it’s “just me.”
So I doubled down on the writing and meditating techniques and started doing them twice daily and kept going and that is when my real healing began. If you’re part of the Crappy Childhood Fairy community, you know I offer a free online course on these techniques –the links are below. I also offer free calls where you can try the techniques with me and ask questions. Thousands of people are doing this now.
But the point here is, after flailing around with Childhood PTSD for years, I figured out how to heal, and my whole life got better. I got happy and I got healthy and my relationships changed and I remarried and started a company and — this was such a miracle — my medical nightmare transformed. My never-ending surgical problem ended two years after the 14th surgery. I saw my doctor and she said Huh! It healed! And I had a surgery to get rid of the devices and workarounds that I thought were going to be a permanent fixture. I’d tell you more but it’s too gross. So maybe another time.
But I got it into my mind that maybe I’m not alone — maybe a lot of people are having health problems related to trauma and maybe they could have dramatic healing too, and maybe we could learn from each other and maybe there’d be doctors and researchers who would totally want to be in on this and figure out why people with trauma are at such increased risk of somaticizing — that’s when the trauma is expressed physically. And maybe we could better learn how to flip switch into UN-somaticizing, into neutralizing that toxic influence of trauma and reversing the damage to our bodies.
To do this, we’d need doctors on board, right? And I started thinking — wouldn’t it be amazing if I had a doctor who gets it?
At this time, I had a primary care doctor I liked enough. I was at a visit and I mentioned to her that I do this website and YouTube channel called Crappy Childhood Fairy and I asked if she could point me to the researchers and physicians who are at the cutting edge of this science because, maybe I could be part of finding a better way to help us, or at least I could get healthcare tailored to those weird, ACE-y problems that I tend to get.
So with all this enthusiasm and spirit of curiosity I ask her – Who should I talk to? Was there a group or a study for high ACE score people like me?
And I’m sorry to tell you, she had no idea what I was talking about. This was just a couple years ago, and I wasn’t in some small town. I was at the flagship medical center of the health plan where the ACE survey was invented. My doctor said she’d look into it for me and after a few weeks I hadn’t heard from her and so I e-mailed her to remind her. And here’s what she wrote back to me:
Hi Anna. I do not have any formal additional training in ACE care, but feel comfortable and confident in my knowledge base of how these ACEs can affect adult health. I do not know of any directory of folks within the department with specific interest in this, but can think of a couple who do work with domestic violence prevention and that might be the most relevant. There are of course other resources within (the organization) we can avail ourselves of, within Psychiatry etc if need be.
Now just in case that sounds like an OK response to you? It wasn’t to me.
It was devastating. I had shared this incredible miracle with her — that I figured it out, that I healed my brain and physical problems that supposedly couldn’t be healed, and I wanted to learn more. And apparently, all she heard was “domestic violence” and “psychiatric service referral.”
I can’t tell you how ashamed I felt that I had ever said anything at all.
But I’m the Crappy Childhood Fairy, and I’m all about getting free of pointless shame and becoming my real, true, original self, which is a smart, kind, funny, sometimes cranky but honorable person, and a warrior when it comes to setting what’s wrong with this world, right.
In other words, shame is not my thing. This was hard to write and share, but now you’ve read it. I hope, through you, it makes a difference.
We’re counting on you.
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