I’m a forty-two-year-old woman, haunted by mental illness for as long as I can remember, and yet it’s only within the last two years that Complex PTSD has become known to me. No one in the mental health profession has ever uttered the words to me. The only reason I know the name and recognize the symptoms as my own is that I’ve done my own research in an attempt to heal myself. Why is it so hard to find a diagnosis that actually fully explains the unique symptoms we live with and have to learn to survive with every single day?
I was diagnosed with depression and generalized anxiety in 2000. It’s a diagnosis that has stayed the same for the last nineteen years, but to me, it never seemed enough to explain the severity of the many symptoms I suffer from. The sheer intensity of emotions; the constant disconnection and loneliness, as though interacting with the world through a sheet of glass; the emotional flashbacks caused by a song on the radio (the 80s music that everyone seems to love is the soundtrack to my abusive childhood), a horribly familiar name, the scent of a certain food; the interpersonal relationships that seem to come so easily to everyone else, but to me are surrounded by pitfalls of mistrust, potential red flags and a paradoxical habit of completely ignoring them in certain people, only to yet again become entangled in abuse.
I know that I don’t navigate the world in a so-called ‘normal’ way, but I was at a complete loss to understand or explain the reasons why. I came to the same conclusion as that of many people who’d worked with or generally interacted with me – I was just weird.
For a long time, I thought that I must have Borderline Personality Disorder, purely because I feel emotions to an intensity that border on the ridiculous. Music is my main trigger. I ride the songs like a rollercoaster, each one bringing to mind a person, memory, a situation real or imagined. I tend to listen to music whilst traveling, so that’s always fun! I look at my cat and well up with tears because I love her so much. I have a huge sense of abandonment due to different life events and can feel very insecure and scared in relationships. But… a lot of the criteria didn’t hit home with me. I wondered if I was a ‘quiet Borderline’. I didn’t see anything wrong with either of these diagnoses and was willing to accept that I fit the description in a slightly irregular way, but it still just didn’t feel right.
I once asked a therapist what my actual diagnosis was, and was asked why I needed one. He told me that labels didn’t help anyone’s recovery, or affect the treatment they were given. At the time I wasn’t confident enough to argue that it was important to me to just know. I wanted to have a concrete explanation as to why I felt so different. A label would have helped me, especially in this age of internet support groups and Facebook pages.
I think most people are self-motivated enough to go diving for information on their own personal symptoms, and with mental health support often being hard to find anywhere in the world, these groups can literally be lifesavers. I don’t know why this isn’t taken on board by mental health systems who don’t like to label people. Surely that should be our own choice? Giving a name to something can help you understand it, instead of just having a cluster of symptoms that don’t make any sense separately. They can cause depression as a symptom, but that doesn’t mean that they are depressed. Of course, CPTSD isn’t an official diagnosis that mental health providers can give yet, but I’m certain that there would have been more to my diagnosis than depression. I wanted to hear their opinion on the personal things I’d shared with them, and discuss a diagnosis as part of a team.
I can’t actually remember the first time I knew C-PTSD existed. It may have been in an article I read on a Facebook page, but I know it was purely by chance and I knew it was what I had. There was such a sense of relief in that, knowing that there was a specific name for all of my symptoms and that other people out there felt the same.
I didn’t feel so ‘weird’ anymore because there was a very valid reason for the way I saw and interacted with the world. It wasn’t my fault, and there wasn’t anything ‘wrong’ with me. Just knowing that was like a form of therapy because it took a lot of weight from my shoulders. And, just as with a physical diagnosis, once you have a name for what’s ailing you, you can begin to work on healing it. I researched articles and searched YouTube for videos about it, a lot of them from people coping with the same condition.
Now when I see my (private) therapist, I feel that it’s a collaborative relationship because I know what needs working on and why I’m affected by certain things. I’m training the logical part of my brain to step in like a nightclub bouncer whenever it senses trouble, to take a pause and look at the emotion I’m feeling, try to recognize where it stems from, and realize that it will pass. Most of all, it’s actually okay to feel it – I don’t force myself to push it back down because I’m ‘being silly’. It’s taught me to be more self-compassionate because the person actually hurting is the little girl who was made to feel less than everybody else.
I really hope that Complex PTSD becomes a mainstream diagnosis because there is such a need for it to be. I feel lucky to have discovered it by chance, but why should anyone have to rely on that to find healing, support, and solidarity with other survivors of abuse?
A survivor of childhood abuse. Always working on myself and hoping to help others in the process.
Twitter: @Verity_Wolfe
I am 64 and just discovered cptsd. I have never felt normal. It is so great to gave a label. Now I need help to heal.
I hope you find that help. Wishing you all the best xx
I was diagnosis 10 years ago with PTSD, it was such a relief. I am 44 and finally in a DBT group. Being with other people like me is therapeutic in and of itself. Hence why the important of not being ashamed of a diagnosis or label. I love how your bouncer protects your inner child, in an emotional trigger. I will use this imagery. Namaste
It must be nice to have a group of people to share therapy with. Maybe at some point in the future I’ll be able to do that. Finding therapy on the NHS in the UK is very difficult at the moment.
I’m so glad the imagery inspired you!
Best wishes xx
Finding a therapist is doable in US but finding one who has the knowledge, experience and willingness to help has been a fruitless search for me. If one has money it is easier. It boggles my mind how ignorant they are about PTSD. I too recently heard about complex from aDr. In passing& was told the difference between the two is the dissociative effect, describing the sensation of not being fully present, feelings of our of body and as if your watching yourself from far away. A complete dissociative event is a complete blackout in which you cont. to speak and act but later have no memory of it. I’ve had a few with one total blackout. It scared me to death but when I learned what it was and why it made me feel so much better about it. In general, people label others wrongly that hurts a lot. But wanting a name and diagnosis is not labeling but a cop out. They don’t even bother to try anymore, just treat depressions if it’s a one size fit all. To people like us who spent lifetimes searching for answers & names from which we suffer, Na?as ARE Important. We deserve better.
Yes I feel the same. Diagnosed three years back, Had about twenty sessions of counselling then EDMR. But still feel completely lost in day to day living. Nightmares calmed down. I was on a long list to get some more help, but then told I got taken off, because I never replied to a letter, that I never received. Still waiting for help. Feel worse now then before diagnosis, and mentally confused with bad memory. And feel like giving up on a regular monthly cycle. 57 year old female.
I hope you manage to find some help, it’s so difficult to cope with alone. I find journaling helps, but it’s not for everyone. And yes, monthly cycles just add to the emotional rollercoaster.
Wishing you all the best xx
I “fell on” C-PTSD randomly when I was reading something online about feelings of worthlessness, it’s indeed strange that a lot of persons seem to totally pass over it, especially therapists. As someone who wasn’t really abused (“only” some bullying) but suffered way more of basically complete emotional neglect (and emotional abuse so to say) by both parents, it was very hard for me to even recognize I had something. I knew I felt bad all the time, but it was as if, like you say, I was “just weird”. You can’t fight an enemy who you can’t see and who has no name. And although it’s hard to admit to yourself that you have problems, I now think that knowing bad news is way better than feeling lost because of total uncertainty.
I totally agree, I’d rather know the truth and have a name for what’s happening.
I think it’s important to recognise that any abuse is valid and can severely affect us. Mine was mostly emotional but that can be hugely scarring.
Best wishes xx
Are you me? Oh wait, you have a cat, nevermind. 🙂 (42F) What kind of therapy are you doing?
Hi twin!
I’m doing EMDR therapy with some CBT mixed in. EMDR works best for me long term, as the others don’t seem to ‘stick’.
Best wishes xx
I have have finally been diagnosed with CPTSD…I’m having a hard time finding a trauma therapist…I’ve received therapy since I was 17 (I’m 53 now) for anxiety and depression…when I was in my either late 20s or early 30s I had a therapist that was fairly progressive and tried EMDR…which did work…though it’s a very long drawn out draining process. I’m currently starting to give up any hope and thinking abut suicide as an answer…I’m exhausted and discouraged. ..I had a breakdown 10 years ago…haven’t been able to work since…I had another breakdown in June…I have absolutely no support…please help me
Hi Stephanie,
I’m sorry you’re feeling this way, this illness is so difficult. The only thing I can suggest is trying to find an EMDR therapist if possible. I don’t know what your circumstances are, but many therapists will offer discounts in certain situations.
Please try and take it easy on yourself. Sometimes we have to feel the feelings and let them pass over us, as difficult as that is. They always do pass. I know you can do it xx
Take good care of yourself xx
I can relate to your story sooo much. I’m 46 and just discovered the link between childhood trauma and the effects on the nervous system through a TED Talk by Dr. Naomie Harris that a friend reposted on FB in 2017. Then in 2018 a friend gifted me Vessel Van Der Kolks book, The Body Keeps Score and then this year I first learned about Complex Trauma and CPTSD through my own internet research which was liberating. It was the first time I felt accurately seen and heard after years of feeling misunderstood, misjudged, etc. by myself and others and wandering in the wilderness of recovery while still searching for root causes of the autoreactions/responses that I had little or no control over. I guess it’s a journey and things have built it led up to this point. It’s longer and slower going than I’d like but I am grateful I’m at least moving forward in the right direction now with renewed purpose. Reading about your experience just confirms this. Thank you so much for sharing. 🙂
I’m so glad it resonated with you! It’s upsetting to know that so many people are suffering, but also good to know we aren’t alone and that others understand. That’s so important, I think. It’s an amazing feeling when everything clicks into place and we realise what’s actually been happening to us.
Your comment inspired me to buy ‘The Body Keeps the Score’, after thinking about it for ages! So far I’m finding it very eye-opening.
Best wishes xxx
Hi, Verity!
Thank you for your thoughtful post! I’m 27 years old. I discovered the term C-PTSD about a week ago, after receiving years of medication and talk therapy for depression and anxiety. You’ve summed up perfectly how frustrating it is to try to seek a diagnosis. Yes, having a diagnosis helps! I don’t feel like I’m weird or defective anymore. Thank you for giving the community hope through your kind and eloquent words.
Solidarity in healing,
Emily
Hi, I’m 42 years old. And I first heard about CPTSD just 3 days ago. Everything is suddenly making sense to me. For the first time I don’t feel like a pathetic excuse for a human being, because I feel like I’m finally about to be understood. It’s a massive weight off my shoulders. However, I have just come out of a relationship with a narcissist who has been trying to take my children away from me by attacking my mental health. I want to talk to my doctor about it CPTSD but I am terrified that if it goes on my medical records that he will use it in the future against me. We have completed the court hearings and I have been granted that our children live with me, but I don’t underestimate his capacity for revenge in the future, and I’m terrified that he will find out and weaponize a diagnosis.
Xina I tjink you’re wise to be cautious about having anything on an official record that might be used against you. Well done for getting away and best wishes.
I’m 60 and just learned about CPTSD two months ago. Even with several therapists in my past (the last one was 3 years ago), none of them ever mentioned trauma.
It was only through Logosynthesis coaching that I even realized I had a trauma, but still, I lacked a deeper understanding of it. Now that I know I have CPTSD, which was caused by CEN and has a strong freeze response, the total helplessness is gone. Finally, I can do something about it.