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?