In all these years, I had no idea what was happening to me. I was terrified. But I never told anyone. I did not dare. 

 

Image: Dreamstime (with licence)


This is what Nina says in a guest post on helpseeker.net about dissociation. Here you can read the post that has been shortened somewhat. Nina writes:

I post this not only with the heart in the throat, but with the heart on the outside of the body. This is tougher than bulimia. Much tougher.

I have mentioned the word dissociation several times. I have cried out that I have no idea what this is. I am scared. Because this is complex. Is it totally incomprehensible, even to me. And it is not recognized by everyone in the health care system as a real problem. Accusations of simulation, messages that I should just get along and behave normally. I should stop dramatizing and stop desperately seeking attention. Their eye contact full of contempt. Their voices of mistrust every time it happens. 

But after some discussions with a couple of friends who are struggling with dissociation, who have given me more insight and understanding, I will here make an honest outline. Trying to explain what dissociation really is. And how it can be experienced. 

The variation in causes, triggers and expressions of dissociation is enormous. Even within one and the same person. Also with me...

 

What is dissociation?

Dissociative disorders are characterized by one or more integrated mental processes such as consciousness, memory, identity or orientation, being split or dissociated from the rest of the mental abilities, so that the person's function is changed or inhibited. This can occur suddenly or gradually. It can be acute, episodic or chronic, and it can occur for example during crisis. 

Dissociation is an unconscious mechanism that is activated to protect the individual against threatening impulses, or against emotions that are so conflict-filled that he or she is unable to tolerate them.

Thorough examination has ruled out somatic and neurological disorders as the cause of the symptoms.

 

My brain disconnected

I have struggled with this for a long time. From when I was quite young. It has become more and more extensive as the years have passed. It has assumed several forms. But people rarely noticed. And if they did, it was in the form of what is called a dissociative stupor, and everyone thought I was asleep. This was frequent at the folk high school (i.e., a particular type of boarding school). She sleeps everywhere all the time... under the table... on the coach... everywhere.

This was probably the year my dissociative problems were most visible to my surroundings. Because we lived on top of each other. There were many strong impressions all the time. 

And my brain disconnected. In order not to short circuit. At the time, I even thought I was pretending to be asleep. And this embarrassed me terribly. I was terrified that people would understand that I was lying there and made them think I was asleep, when I heard and observed everything that was going on.

You're a lier... Sometimes it turned out in the form of partial seizures. I usually managed to hide these in the start. But eventually I was discovered. Terrified. I do not know what they were thinking. I dare not think about it.

In all these years, I had no idea what was happening to me. I was terrified. Simply terrified. But I never told anyone. I did not dare. 

Because they probably would not believe me. They would believe the same as I did myself. That I pretended. 

 

Keep it difficult at a distance by always being active

I did everything I could to keep it away. Being active all the time. I kept my head engaged and busy constantly. 

I never permitted myself to feel my emotions, or even to consider important and deep thoughts about myself. 

Especially not after I moved to Trondheim. I was at lectures and working all week. I started to work as a shop steward. And when I had to be home alone and everything threatened to take away my right to decide over my own body and my own head, then I overeat and vomited until I almost fainted and finally felt asleep on the couch with the TV late at night... 

I could not sleep long. I could not go to bed without being completely drowsy. If I did, my brain would be hit by a tidal wave of thoughts and feelings that would take away all power over me. 

So I ran and ran and ran and ran. For 6 years. Without understanding why. Without wanting to understand why. 

 

- Have you heard about dissociation?

I almost forgot that it all existed. Until a May day in 2007. During the exam period. I was exhausted by bulimia. And I made a desperate attempt to have a day without.

That night was not very good .. I did not overeat. I did not vomit. But I spent hour after hour after hour in a state of convulsion on the floor, unwinding on the couch, and in a panicked flight around the bed when I tried to lie down... 

The next day it was back to bulimia, so to speak. It was cruel enough. But in a way, so much better... Because I knew what bulimia was. It had a name. I kind of had control over it. But this "other thing"... it controlled me 200% and I had no idea what it was. I was terrified...

Only just before Christmas in 2007 or just before the New Year 2008 did I get a name for it all. 

After it all had exploded in the face of both me, staff and fellow patients when I was admitted to psychiatric hospital for the second time due to the eating disorder. It was all about getting food in, stop vomiting, gaining weight. I needed both medicines AND sleep. I didn't want any of these. And this happened overnight with only very short notice. 

I think what happened surprised most people. And it scared the crap out of me. It was a tough time for everyone. Including my fellow patients. And finally came the words: "Nina, have you heard about dissociation?"

No I had not. After six years as a medical student, I had actually never heard about it. I had no idea what it was… 

But finally it got a name. This was not just something in my head. I was not me trying to "fool" others. And after an examination to rule out that I might have epilepsy, they landed on this diagnosis: A dissociative disorder. 

 

How dissociation can be like

How this is experienced varies from person to person. I only have my own experience. But I know two others pretty well who are struggling with the same. But still, we have little in common. 

The common denominator for me, no matter how it behaves, is that I am terrified...

Usually I get a warning. Or now, as I am more confident in the concept of dissociation and as I know myself better, i can take precautions, prepare myself, map out, and maybe even ally myself with someone. If I get a warning, I can manage to run away. Escape. Pull out of the situation, dampen the impressions and maybe avoid losing control completely. 

But sometimes, triggers come without warning. It can be sounds, tone of voice, words, sight, bodily events, statements from me, actions I do.

It depends on where I am. Who it is. How tired I am. How much anxiety I have in the first place. And to what degree I have control over the situation. During hospitalizations, this has been frequent. Very frequent. It abounds with triggers and things that are perceived by my brain and nervous system as real threats. Although they are far from it. 

And in the "outspoken" form, when I dissociate I can look like a child in a violent tantrum. And if I'm scared enough and insecure enough, then that child can get quite loud too ...

 

Stupor, trance, motor disorder, seizure, voice loss

I have many different forms of dissociative problems. Stupor. Transe. Motor disturbance. Seizure conditions. And sensory loss in such a way that I lose my voice... 

It is important for me to emphasize that this never happens in a normal workday. Whatever the triggers might be. Because in this setting, there is another person in charge. 

And that's why predictability is so important to me. I need to spend some time getting to know new places. Including workplaces. Meeting colleagues. Especially bosses and supervisors who I will have a lot to do with. 

I need a phase of 1-2 weeks for this. 

It is not about coercion or rigidity. It is about a desperate attempt to protect myself and not least the environment. And to experience mastery instead of gigantic defeats. 

 

Transformed in a nanosecond

There have been some episodes in the public. When I have biten over more than I can chew and when I do "everything" in my desperate attempt to fit in and seem normal. Not ill and disabled. 

In such situations, it may literaly take a second before everything is turned upside down. 

Although it may take time before others notice it. Something in my brain became aware of what I was doing. How I behaved. What I said. And in general. A bunch of things I was not allowed to do. My head full of howling and screaming in a second. Drum membranes that are threatened with rupture. 

And suddenly I was silent and motionless. Transformed from one second to the next. Without me almost registering it myself.

There is also an additional aspect to this... I am transformed from one state to another in a nanosecond. It's not about getting along.

There are switches that go on and off in the brain. Simply explained. It turns off some parts and turns on others. And then back again. Fully automatic. It's not something I consciously control. It can result in an extreme gap in functional level. 

 

Have control in some settings

As for those who experience both, it may seem so incomprehensible that it is concluded that it is impossible. And that I therefore pretend when I am not a very high functioning adult full of resources.

Like when I am filmed on TV and calmly explain about a disease full of taboos without blinking or without being even close to losing control once. Or when I work as a doctor and act as just a whiz without being even close to being scared for a single second. 

How does this really work? I'm trying to get wiser. Fortunately, my psychologist has long experience with dissociative problems. And she has told me about other patients who may appear psychotic during the session, and out in the parking lot they are themselves again, driving home and making dinner for the kids… She is never afraid that they are not able to drive. Because she understands that when you are out the door and without feelings and threats, things turn off again, and do not relate to what became difficult in the session.

From one personality to another in a matter of a second… and then back again… But I notice everything and remember everything….

Now many of you probably think I'm about to go crazy. Completely insane. That I never should be even close to patients or children or for that matter a car.

Believe me, I've been thinking the same many times myself. Therefore, I have also been dependent on feedback on how I work. How I am experienced. How my job is evaluated and assessed in relation to soundness and quality and patient safety. There has always been a close collaboration between supervisors and me. At my request. 

I have always been completely open to both the boss and supervisors and given a clear message that at the slightest sign that I am not doing a decent job, I want to be notified. Immediately. The word dissociation has not been mentioned. But they have known about the eating disorder and the anxiety. And I have been very open that I want feedback right away if someone perceives me as unjustifiable, or if I make mistakes or things in a way I should not.

 

Many misunderstandings about dissociation ... also in the aid apparatus

I consider myself very up-and-coming and in a good position to assess my own limitations in relation to this. It is also confirmed by those who know me very well. I put responsibility above everything else. And I have a great responsibility to others. Then I must also open up for others to have an eye on me. Simply. When it comes to managing kids and driving a car, this is totally uncomplicated. Something my new psychologist has also been able to confirm to the rest of the health services. In these situations the right  switches turn on. I am in full control. 

And in the periods I have functioned very poorly due to anxiety and depression, then I have chosen to have a certain distance to the children at work. And I have arranged so that I am not responsible for them alone. Because I have not considered myself to be fit for it... This is painful to admit, for one that has passed her 30s...

Many people also believe that dissociation is the same as memory loss. Also patients themselves. I thought so too in the beginning. And therefore I could not believe that this was actually what took control of me. It could not possibly be real since I remembered everything even when dissociaing... However, my new psychologist who has a lot of experience with this, set the record straight: This is dissociation, she said.

According to her, being aware of everything, remembering everything, experiencing that it is all like I am standing on the outside and observing everything that happens with me, is just as normal in dissociation as not remembering anything. This was a big relief for me to, honestly. Many in the health care system are not aware of this. And can say quite "cruel" things because they think I do not hear anything when dissociating.

Struggling with this is at times very tiring and stressful. 

And if you didn't think the comment "just get along" was frequently used when it comes to eating disorders, stopping vomiting, or mobilizing out of a depression, well, then I promise you it happens quite frequently here. Not just among ordinary people, where I can really understand that reaction. But also within health care.

 

Some things that need to be reprogrammed

I am not stupid. I'm not crazy. There is nothing wrong with my brain capacity and my ability to learn or apply my knowledge. None of what you have experienced with me and impressions you have received from me are any different than what you thought. It is 100% real, what you have seen and met.

But, my brain has been damaged. There are short circuits and faulty connections in vulnerable areas. As well as some "computer viruses" from a time when there was no anti-virus program... Which takes a long time to repair. Which allows me to appear in extremely different ways. But everything is me. 

It is not impossible to fix the damage. But there are some things that need to be reprogrammed. And replaced.

A lot has happened in the last 2-3 years. Very much. Through the fact that I have had safe people around me. And that I am finally believed. That I am no longer accused of simulation. And I got to work with integration in therapy. Because that is what I have to work with in the future. Integration. Not integrating refugees in our society. But integrating myself. 

- From the blog Back and forth - just as far?

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