Kate, December 7, 2017

Picture of blogger: Kate

Having a dissociative disorder means that I haven't been myself for a long time. I feel like a mimic of myself. I'm a person trying my best to play ‘me’, when I haven't been properly briefed on who it is I'm meant to be playing. It's confusing to say the least.

Up until the age of 17, my mind was clear. I experienced anxiety and nervousness fairly often, but my head was firmly planted in reality. Things were simple, they made sense and I had always felt pretty 'normal'. The day I began experiencing dissociation, all of that was gone. My mind had changed in the space of an evening. I could no longer think clearly; my head was filled with a thick, disorienting fog. I felt disconnected from my surroundings, as if I was seeing the world as you would in a dream; like I wasn't really there. From then on, I began experiencing derealisation (alteration in perception), depersonalisation (feeling ‘unreal’) and dissociative amnesia (memory loss). 

Dissociative amnesia has caused big chunks of my life to disappear. However, they are not gone for good. As time has gone on, memories have slowly begun to reappear. Yet when it comes to things like university, which I attended for two years, it feels as though it never happened, as I was dissociated the entire time. 

The biggest problem I've found in everyday life with dissociative disorder is social interaction. I find speaking to others and holding a conversation very stressful. 

Dissociation makes it pretty much impossible to form simple thoughts, and it's difficult to find anything to say when your mind isn't there to form the words. I panic when someone asks me a question because I know for a fact that I won’t be able to answer it coherently. When dissociated I display no emotion, opinion or reaction to anything. My mind feels totally blank and numb. It makes relationships of any kind problematic because when your body is present, people expect your mind to be too.

Over the years, it's been rare that I have come across a person who accepts this behaviour without question. I don't mean to come across stand-offish, but because of my symptoms, I often do. I can't help it, I know that and that has to be enough. I have tried explaining to others why I act a bit odd sometimes. Every time I've found the subject makes them uncomfortable, it’s changed as quickly as possible. It can be very isolating. 

The best thing to do, if someone is acting stand-offish or in a way you consider to be strange, is to be kind to them and treat them normally. Talk to them as you would anyone else and don't take the way they are acting personally. I often find that when I am at my worst is when I get the bad reactions from others, which is the opposite of what I need. Being treated like there is something wrong with you only makes things more isolating and distressing. 

The more mental health problems and their symptoms are understood, the less people will be treated differently for behaving in a way that they cannot help or change. It is so important for these people to feel as though they are not alone. People with mental health problems deserve to be treated with kindness and respect, like everyone else, and to be given the confidence and strength to live life as best we can.

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I accept your truth

Thanks for sharing your story. I have 2 close relatives and spent decades as a witness to this tragic disorder...tragic because as we know it is preventable. I picture them as the little children in the photos I see knowing what they went through and it breaks my heart. I'm afraid to talk about it because I don't wish to violate their privacy. But I have walked on this journey and seen with my own eyes everything you describe. Perhaps the best people to validate you and offer support are close family of survivors who do not question it because we are the silent witnesses who saw it unfold and we understand and know these are intelligent incredible people and that this is a very real and probably common disorder. Thanks for sharing what it is like for you it is so helpful to be able to compare notes to offer help to loved ones. What is so striking is the strength of those with this disorder in their super human ability to climb a mountain and go through life working so hard and resourcefully trying to accomodate the disorder (it took decades for me to even realize there was switching taking place) and despite basically having intermittent amnesia and horrendous traumas that come bursting into consciousness as adults as though waking up from a nightmare only to realize it wasnt a dream they keep on keeping on. Facing so much and losing too many of the present moments and pleasures of life... yet you are amazingly strong and such hard workers doing battle with an invisible and stigmatized illness that was inflicted as children and which prevents even you yourself from realizing anything is not normal...to even be able to discuss or get support. Even therapists are undereducated. Both people I know hold full time jobs (as they have a competent worker part) and faced this alone as i alone know... we tried to cure it diy due to inadequate therapists and risk of stigma until at last we found a specialist. It was often misdiagnosed as cluster b. Which I now know believe are symptoms of trauma and dissociation. The therapist described dissociation like grief. When a loved one dies we don't cry 24/7 ...we sometimes set the grief aside to work function etc. Thus we dissociated from the grieving because it is still in us we just aren't aware of it presently. That is a mild form. dissociation is on same spectrum as ptsd ...and severest form is DID.


What did you mean when you say in your comment "tragic because as we know [dissociation] is preventable?

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