I never cared much for the label,’ disorder.’ I got used to living with it hanging round my neck, like a sign directing others to crazy. Did I ask for it. No. No one does. When I received it as a diagnosis I felt relieved. I knew I dissociated, I knew I did it a lot, especially since I got clean. But of the whole book of stories, forgotten within me, the sheer volume, I had no idea. It was heavy, deep, layered. Held within my flesh and bones, waiting for me to read, turning pages one by one. Slowly taking in every last word of the small children who told, their faces turned to the sunlight now, as the door to the locked room was opened. I was a very smart kid, there’s no doubt about that. I used my intelligence to create a mind system that saved my life. I learned to adapt to unrelenting terror. Adapt. I like that word, it suits me better. I adapted and my adaptation was dissociative identity disorder. See ? That word. It seems so unfair to call someone who has survived sexual, physical child abuse and rape, disordered. Who does this word serve ? In the beginning all I cared about was getting the right help. I was raging about that word though. I still felt shame, I cared so much about what others thought. So, after a while being labelled disordered killed me. I wasn’t that way. The people who put me in this label were the disordered ones. Today I don’t care like that. I stopped caring after I faced the unforgotten, the reason why the diagnosis exists. Facing all that takes you to another level of consciousness, where words don’t exist. If you are a survivor of organised child abuse you know what I mean. But starting out on this journey I cared deeply about, ‘disorder’ and having this label. Remembering the truth is the essential way to freedom, the road back to the real self, the truth then is my best friend. If I developed a way to cope which made me forget the truth, then forgetting was disordered for me, because I needed the truth more than anything. Remembering was, and has been the only way I could leave the past and not be stuck there forever. Remembering is the way I reclaimed all those children, lost in suffering, alone in the dark setting them free to tell, to feel. Letting them live with joy, with love.
Understanding is all I’ve ever craved about my dissociation. Knowing why I had to do what I did, and how I did it. Searching for the truth and finding everything I had ever hidden because I had to. Really understanding requires a language of delicate sensitivity to explain it. A language of love, of emotion. I have tied myself in knots about what words mean, because they are the only things we have to communicate our truth, and words in this case, they are not enough. I cared what those words mean to others. If others see me as disordered, then often they see me as ill, or crazy and I was never crazy. I was hurting. I was surviving. Now I know the full extent of that hurting I can laugh at the label disorder. Language is so limited when it comes to child abuse and trauma, so people have to come up with something that protects them and disorder covers that. Recently I’ve been going through this questioning of the word disorder again. I’ve come up against a lot of misunderstanding about DID, it has raised a lot of questions. I’ve had to advocate for myself with medical professionals who don’t get dissociation. They certainly don’t get DID. I may have well been talking Russian. I have felt invisible and that’s a trigger, I was invisible as a kid. If they see me as disordered then they don’t have to try to understand the complexities and layers to DID. They don’t have to be sensitive to the fragilities that make up this condition, while also not recognising the immense work I have undertaken to actually become sensitive to those vulnerabilities. It’s so frustrating. You want to be seen for who you are, and why you are, not a label. A label that makes it easy for them, not for you.
On the inside looking out. On the outside looking in. That’s how it’s felt lately trying to explain to these medical people how you are impacted because of your DID. Most of the time I haven’t even bothered. I have only offered explanations in terms of the Complex PTSD I live with, which the DID is a part of. Trying to explain I have other parts to my personality who have valid needs is a tricky balance. I soon learned who I can do this with, and who I can’t. You end up leaving stuff out when their eyes start tilting to one side and the face develops a glazed look, feigning kindness, which is really pity. You feel the pity, you know there is no further you can go with talking about what you need, so you have to do it in another way. Bend it to get your needs met. To advocate for your parts. It’s hard work, there’s a world there you need seen. Sometimes it has to be enough that it is only you that sees your world. I hold onto that, I make sure no one, especially doctors who want to dictate, are not getting past this. It’s not that I would ignore sensible advice, but I see that they will give me options that suit their need to deal with me in the easiest way FOR THEM and this is not always what is best for me or all of my parts. As I come to understand once more, to see the lack of understanding about DID it saddens me. It also makes me feel passionate about continuing to speak about how I live in this way, and how I try to heal. Forgetting again is not part of my plan and neither is being silent when I am met with judgement or pity.