I was about 14 when I was first referred to the mental health services, I was only with the children’s services for little more than 18 months before I was moved the adult services since back then the cut off point was 16, but I was 24 before anyone mentioned dissociation to me. 10 years between entering the mental health services and someone noticing and connecting the dots between my symptoms and making the relevant referral for the right course of treatment, psychotherapy. So my question today is, why 10 years? How did I go from psychiatrist to psychologist to community nurse to occupational therapist to councellor and so on and so forth, without anyone realising what the real problem was?
In the past I’ve bounced between two explanations for this – number 1. It’s the fault of the professionals who wouldn’t listen. Number 2. It’s my fault for not explaining. Now I have problems with both these explanations, maybe age really is bringing me wisdom, so before explaining my new theory I’ll rip apart the old ones. Starting with number 1; whilst my 15 years have acquainted me with many professionals who do seem to think that their patients are wasting their time and attention-seeking whenever they question the first diagnosis given, the majority have a genuine concern and desire to help however they can. I’ve had community nurses who have come out of their way to check up on me because I mentioned on the phone yesterday I was struggling, but I’ve also had one call social services with false assumptions and accusations because she thought “dissociation endangers my children” (complaints were filed and carefully overlooked, I’m still furious) so both ends of the scale definitely co-exist. The basic facts of professionals are that they studied hard to get there but they can only study the information at hand, they are trained to take notice of details in symptoms but they are not mind readers, and as with any group of people you can’t assume they’re all the same as the worst of them. In other words if I don’t tell them what the problem is how can they know? Which leads nicely onto number 2; it’s my fault for not explaining. One thing we’re always told, and rightly so, is that when you go to the doctors you have to tell them everything, explain your symptoms clearly, give them the full picture of your problem so they can accurately diagnose you. Except that if I could do that, I wouldn’t be there asking for help in the first place. One of the major parts of dissociation is a severe lack of words. Thoughts without words, feelings with no connections, reality mixed in with dream, explain that one to a doctor through a thick fog when all you can focus on is your own hand and whether or not the chair you’re sitting on is really there. It’s not going to happen. Most of my early councelling sessions were spent in silence, not usually by choice (although I didn’t like my very condescending children’s councellor) but because the words would not leave my mouth. I had issues with open questions like “how are you today” “what would you like to talk about?” ” what are your goals in therapy?” I can’t answer those questions! Ask me something specific like “do you have a headache?” or “is there something particular you’re wanting to say?” in other words yes or no questions, I can answer unless I’m completely zoned out. It took years of failing to communicate and getting more and more frustrated with the wrong questions and the wrong assumptions before I found ways around the problem – I developed an opening speech of sorts that I gave to every new practitioner stating my inability to answer open questions, my difficulty finding words and a few metaphors for what its like here in the fog. Slowly I got through to them, very slowly.
So if doctors can’t read minds and I can’t speak openly and clearly its little wonder why it took so long to get a diagnosis and a relevant referral. The real culprit here is the lack of information available. Doctors degree’s are of little use to a dissociative patient, if they don’t study dissociation and know the symptoms. The test for depression is a list of yes/no questions relating to the endless symptoms depressed people experience, even if the person suffering can’t articulate very well the doctor can diagnose them because the symptoms are well-known and therefore easier to recognise. If the symptoms are known they can be recognised, the doctors can look for them and see the problem without the need for patient articulation. So why is dissociation not studied and a list of common symptoms listed and taught to doctors and nurses etc? I don’t know. Information itself isn’t lacking and general awareness is growing but until it’s properly taught through professional training incorrect diagnosis’ and irrelevant treatments will continue because a doctor can only work with the information and training and resources s/he has.
My opinion is training should start with the GP’s, community nurses, A&E staff and school nurses because those people are our front-line troops. They are the ones who we go to for help first, and they will make that first vital judgement and referral, if they get that right they could save years of a patient’s life, if my school nurse or first psychiatrist had known the symptoms and made the correct diagnosis I could have been through therapy by my early-20’s at the latest and much further along my list of life goals in that elusive quest for “good health”. So here’s my contribution to the cause, a list of the dissociative symptoms I’ve always experienced and if there’s any nurses doctors or health general care workers reading this do look out for these symptoms in your patients and be aware that they are a mask for a tornado of inner turmoil.
- Distant – if you feel the person is not quite in the room with you, lost in their own thoughts.
- Not listening/hearing – you’re trying to talk to them but they’re not responding, looking the other way or doing something else, try holding their hands and looking directly into their eyes to hold attention.
- Can’t remember personal details – name, phone number, address, family contact
- Lose train of thought – they might try talking to you but forget what they were saying whilst saying it
- Struggle to follow conversation – they are trying to listen to you but to them you are very far away, speak alittle slower and take things one step at time
- Staring off into the distance mid sentence – not quite forgetting what they’re say but forgetting they were speaking at all
- No emotion or expression – talking to you with no emotion can be unnerving, especially if they’re talking about something upsetting like a trauma, but do not be fooled, those emotions are there and will be felt at a later time, probably without the thoughts and words to explain them.
- Intense concentration on one object or person/animal – this one is important because they might be trying to anchor themselves, for me I focus on my children, some people may watch their pets, or the cup in their hand, the hand itself, internally they’re asking themselves if its real, if it’s theirs. You could help by asking questions about whatever they’re focusing on, make it seem more real to them by talking about it, take it at their pace.
- ‘High’ very excitable as if been drinking or on intense sugar rush – this may seem the opposite of everything else but it’s equally important, dissociation means shutting out reality and that can make you zone out in a fog or ‘go on the ceiling’, seeming very happy at first glance but nothings real. The confusion and difficulty with conversation will still occur in this state.
Those are my symptoms, if anyone with dissociation wants to add to the list please leave a comment, its different for every one of course. The NHS needs to include dissociation in the training of staff or people will continue to get shunted from one dept. to another and put on the wrong medication. Anti-psychotics, anti-anxiety or any medication that includes a sedative or induces sleep, causes drowsiness or confusion will make dissociation worse, much worse, it will trigger off all the symptoms and make life harder – but how will the doctors know that unless it’s included in their training?