Earlier this year, I received a new diagnosis, which didn’t come with the relief my autism did.
Complex Post Traumatic Stress Disorder (CPTSD).
Mind Charity describes CPTSD as: “a condition where you experience some symptoms of PTSD along with some additional symptoms, such as:
– difficulty controlling your emotions
– feeling very angry or distrustful towards the world
constant feelings of emptiness or hopelessness
– feeling as if you are permanently damaged or worthless
– feeling as if you are completely different to other people
– feeling like nobody can understand what happened to you
– avoiding friendships and relationships, or finding them very difficult
– often experiencing dissociative symptoms such as depersonalisation or derealisation
– physical symptoms, such as headaches, dizziness, chest pains and stomach aches
– regular suicidal feelings.”
This diagnosis has coincided with me moving to Australia, for a very good reason. Prior to the move, I was still living in an environment where it didn’t feel safe to explore my trauma without significant re-triggering. As soon as I moved away, I had time and space to process my experiences. As a result, my body started to feel safety, which enabled me to finally explore my past. I can’t lie, it has, and continues to be, a very difficult process and something that is really impacting me day-to-day. Opening the wounds of the past in order to move forward has come with a lot of grief, emotional pain and chronic health conditions symptoms. There have been a lot of emotions I wasn’t ready to feel previously. It has been a difficult but necessary journey.
It all started with some therapy sessions around my experiences of PDA. I felt constantly triggered by the people in my life, specifically my partner. Every time he came home, I would be dysregulated and emotionally heightened but I couldn’t say why. I believe part of it was in relation to my space being disturbed as a PDAer. However, I’ve learnt that I have a fear response to people being in my environment because in life I learnt that people are unpredictable and unsafe. It became more apparent when every time my partner hoovered or unpacked the dishwasher and I had a trauma response. I had to work hard to figure out the causation of this response and it all led back to my past experiences of conflict. After speaking to other people about their experiences of CPTSD, I recognised myself in so much of what they said, so in true monotropic style, I did a deep dive.
The deeper understanding really started when I read the book What My Bones Know by Stephanie Foo, which opened my eyes. Everything she said about her current life experiences resonated and learning about the different methods she used to support recovery also resonated. I had tried so many of the things she mentioned – yoga, mindfulness, various types of therapy etc and nothing seemed to be working long-term. From the book, I started reading more about the body’s response to trauma, which I’d previously read in The Body Keeps the Score by Bessel Van Der Kolk. In previous years, I’d learnt that my emotions link to my chronic illness symptoms. For example, I have a release of emotions from a meltdown and my body recovers. There was an obvious pattern between emotional stress and my flare ups. I decided I needed to work with someone who specialised in trauma combined with autism and ADHD.
My therapy initially started with talking about my past experiences, the emotions that arose from this and the triggers I face in every day life. I had spoken about a lot of this before and not got anywhere. Instead, the therapist suggested some somatic work based in my body. This included Tension/Trauma Releasing Exercises (TRE) and Eye Movement Desensitisation Reprocessing (EMDR).
Tension/Trauma Releasing Exercises
It was obvious that I held a lot of my emotions in my body. I grew up suppressing my emotions because they were too much for other people. My emotions weren’t safe and I hid them in my body, which later resulted in meltdowns when I couldn’t hold them in anymore, followed by shame spirals. Initially, I found it really hard to understand how to do the exercises, but after viewing some guidance on YouTube I finally got the knack of beginning tremors. This is one of the weirdest experiences I’ve ever had, my body took over and threw me into all sorts of positions for around 40 minutes at a time. Sometimes I didn’t feel much and other times I would have sobbing sessions, sometimes without awareness I was even holding that emotion. I hadn’t cried like this since I was a child and it felt so exhausting but freeing. A huge cry was exactly what I needed every day.
I had to be wary of my chronic health conditions due to the vulnerability of my neck and back especially, as some of the positions caused pain afterwards. The more I’ve done the exercises, the more I’ve found what works for my body but it’s always best to consult with someone around this. Since using this approach to releasing tension, I’ve noticed significant changes in my body, including a reduction in inflammation, bloating and general pain. My digestion has been better and my weight dropped quite a bit from the reduction in inflammation.
EMDR
Next, we slowly worked up to EMDR. This has got to be one of the strangest things I’ve ever done! The process was set up by me first recollecting positive memories across my life, which have made me have good cognitions about myself, such as “I am strong” and “I am loved” etc. One of the memories I used was my hen do last year, where I was surrounded by my beautiful (and mostly neurodivergent) friends, who accept me and love me for myself. I spent the whole weekend feeling so loved, understood and appreciated. The process of re-experiencing this through EMDR made me sob uncontrollably. It was such a beautiful feeling. Once I’d gone through enough of the positive memories to build a foundation, we moved on to the difficult stuff.
Of course, it was hard to focus on just one thing, as the nature of CPTSD, there is chronic trauma and not an isolated incident. Going through some of the memories was one of the hardest things I’ve ever done. My body was in so much distress and I felt just how I did at the time of the trauma. I literally tried to squirm out of my body it was so uncomfortable, including tensing myself, squeezing myself and wriggling/fidgeting. I even did some of the exact movements I did at the time of the trauma. It was so raw. Slowly, through the process, I was able to feel less and less distressed by the memory until it barely gave me an emotional response. Now, I can talk about it without feeling the feelings, but being cognisant of them. A lot of my memories felt to be blocked, but I could still feel them in my body, which gives some level of closure.
After processing the difficult stuff and the negative cognitions that came with it, we then ended with a positive memory with the opposite cognitions, which helped me feel differently about myself. I have cried so much during this process, something that I’ve never really been able to do in front of people before. Whenever an emotion arose, I would try to squash it back, stop talking about it or distract myself. With EMDR, I had to confront it head on, feel it and process it before moving on. It’s given me a new connection with my emotions and really helped me to understand them better as a person with Alexithymia.
Slowing down
Most of the work is done outside of therapy and that has certainly been the case here. I’ve had to spent time intentionally slowing down my life, which I’ll be sharing on social media for others to try too. It’s been hard as an ADHDer. I always thought me going 100mph was all to do with ADHD, but I’ve found that a lot of it is also related to CPTSD. I can’t rest because, if I do, I have to be with my thoughts and emotions which isn’t comfortable, but also because I’m hyperactive, what a mix! I had to take some time off work, away from social media and just spend time with myself. Obviously it wasn’t comfortable to sit still, but I did jigsaws, went for walks without my phone and explored my internal experiences through Tik Tok guidance (would highly recommend some accounts that help connect you back to body sensations). The more I slowed, the more I realised how much I needed it, and actually craved time in my day to just be.
By slowing down, I’ve become more aware of my emotions and triggers. Now, when I get upset with my partner, I take a minute to be curious why. 99% of the time it’s linked to a traumatic experience in my past. He wasn’t simply annoying me because he was unpacking the dishwasher loudly, it was because I felt fearful based on my previous experiences of loud noises. More often, I can remove myself, regulate and then come back to a situation with a new lens. I have to admit that whilst going through the early stages of the trauma therapy, I was way more triggered than usual because I was emotionally so raw and everything came to the surface. This made being around other people very challenging because everyone felt unsafe and unpredictable. It felt very lonely for a good few months and I’m so fortunate I had Meeno. To be honest, I’m still feeling very raw and have to be careful to avoid conflict whilst I’m feeling like this.
Getting the diagnosis
Unlike my diagnosis of autism, which came with validation and relief, as well as a lot of grief, this diagnosis felt different. Whilst I was relieved that I finally had an answer to my emotional dysregulation, stress, chronic health issues, and relational issues, I didn’t feel happy about it. For me, being told that I had CPTSD was someone saying “you had a load of terrible shit happen to you that shouldn’t, and now you’re negatively affected for the rest of your life.” At least that’s what it felt like at the time. Autism and ADHD are part of my neurology, although I often have a complicated relationship with them, I wouldn’t change myself. They are a part of who I am and always have been. CPTSD shouldn’t be part of my neurology, things happened to me that caused it, which shouldn’t have happened. I feel a lot of anger about that, and it’s hard to move on from. The damage is an altered sense of self to this negative lens, a constant and exhausting hypervigilance, an inability to fully trust people and connect with people, a feeling of near-constant dread, the worry that this will continue affect the people I love, and so much more. Of course, I can heal from some of my experiences and I can become more and more aware of my triggers as I progress through this process, but my state of being will always be altered and it will take work to continue to manage my mental health.
I’m still working through what this means for me and what it contributes to in the messy web, which is my neurodivergence. I’m unsure what is autism, what is ADHD and what is CPTSD because everything is so intricately interwoven. Perhaps I’ll never know and I’ll learn to be okay with that. For now, it’s a work in progress…
