(names and locations have been removed)
To pass this test
Pain pulses underneath
and biting teeth
How much gained?
How much lost?
I have a story for you, let’s see how people react.
It’s the story of a woman in her 20’s who was suffering from severe recurring stomach pains. She put up with it the best she could for many weeks but ultimately had to admit there was something wrong beyond the usual indigestion or food poisoning. She phoned her GP to make an appointment, but before she could be granted said appointment she first had to go through a rigorous phone assessment to establish whether her stomach complaint was bad enough to need medical attention, or whether she simply needed to relax more. This assessment went on for over 20 minutes and included questions such as how long has it been hurting? on a scale of one to ten how bad is it? have you tried any over-the-counter remedies? is there any family history of stomach problems? have you kept a food diary? and so on. Finally, and by this point she felt she was required to prove her illness without even knowing what was wrong, she got an appointment to see her GP. Unfortunately the GP wasn’t any more understanding than the person on the phone. He asked all the same questions again, emphasising home remedies and the need to relax more. The woman filled out several multiple-answer questionnaires and was then faced with the question to end all questions: What do you want out of this appointment? ….stunned, confused and suddenly under immense pressure to answer correctly the woman felt her stomach pains worsen as she desperately thought of an appropriate response. What did she want? She wanted her stomach pains to go away! But surely that was an obvious and silly answer…she wanted a course of medication? or a dietician referral? a scan? Was this doctor actually asking her what treatment she wanted?? Was she supposed to have done research into available methods of stomach treatments? It was very confusing. She left the GP with a promise that her case would be discussed at the next meeting and a referral recommended for further investigation, in the meantime take things easy.
Weeks passed. She heard nothing. She rang the GP office but was simply promised call backs that never came and letters that were never delivered.
A month later she received a letter offering an appointment with a doctor at another facility to discuss options. Gratefully and hopefully she went, praying to every deity in history that something would be done. The pain was unbearable but the hospital made it clear they wouldn’t see her unless she was coughing up blood or in cardiac arrest.
To her dismay, the doctor was in fact a physiotherapist. He asked all the same questions again (don’t these people share notes??) and went on to explain the treatment being offered – a 6 week course of physio to teach and enable her to carry herself in a way that would ease the pain and make it more manageable, enabling her to carry out her daily life without disruption. She asked, rather tentatively, about the possibility of diagnosis or treatment to get rid of the pain? The physiotherapist simply looked at her – “we don’t do that” he said. “We focus more on pain management and enabling you to carry on with your days. We go through a fairly fast paced course here. If what you want is a more investigative approach into causes etc then you need a different department. We can’t refer you there but I’ll give you a few numbers and you can try to refer yourself.”
The next few months were a painful blur. The poor woman was passed from department to department, sometimes being granted an appointment, mostly being assessed and dismissed over the phone. All the while the pain was getting worse and worse, she felt faint, weak and breathless. Some days she couldn’t get out of bed at all. Her appetite left her completely and she began to lose weight rapidly. She also lost her job – her employer couldn’t be tolerant any longer of the amount of sick days she was taking, especially without any doctors explanation, she was clearly faking it. Friends got bored with her being “too ill” to go out and so they stopped calling.
One day an appointment came through to see a gastroenterologist at the hospital. No longer hopeful and expecting to be dismissed yet again, the woman went along and explained for the thousandth time her symptoms and, in a last attempt at getting someone to understand, the consequences of these symptoms in her general life. The consultant listened, asked an occasional question and took a few notes. He then did what no one had done in months of fruitless assessments, he sent her for a scan and a blood test. The blood test was done immediately but the scan she had to wait a while for. When all the results came back however, an ambulance was sent to collect her and rush her in for surgery – she had been diagnosed with a stomach ulcer, but it had bled and was in danger of spreading infection to her other organs; her life was in danger.
In physical health system this story would not happen – or at least it would be very rare and no doubt be splashed all over the newspapers. You would get a GP appointment that day, s/he would immediately send you for relevant tests and refer you to the relevant specialist. You would not be required to prove your pain. You would not be required to refer yourself for treatment. You would not be accused of faking it for attention and your friends would be more likely to have patience and sympathy. But this isn’t a physical health story, it’s a mental health story. Replace the stomach pain with depression, or anxiety, or hearing voices or losing time and this story becomes very, very real on daily basis. We have to fight and beg for our treatment. We have to jump through hoops and prove our need. And what we are more often than not offered is a pittance, a token treatment. 6 weeks of irrelevant counselling which focusses on management of symptoms but doesn’t begin to look at root causes. In the case of DID you will be profoundly lucky to meet a counsellor, doctor or CPN who have heard of, let alone trained in, dissociative disorders.
The last few weeks have been difficult. A relapse, an episode, call it what you will; either way my inner strength has certainly been tested. So has my patience with our mental health services. I cannot understand how people, like me, can be left waiting so long, only to be offered irrelevant referrals to see professional with very limited training – or at least training in a field far removed from my condition and needs.
If physical health issues were treated with the same disregard as mental health issues there would be public uproar. Suicide is the leading cause of death in males aged 24-39 and mental health is considered a minor problem for someone to have and 6weeks of CBT is the best anyone can expect. If you need more than that you have to literally fight the system for it. You have to complain, pester, repeatedly present yourself as a desperate case, demean and humiliate yourself by begging for professional intervention. For someone with mental health problems, most of which include some level of self esteem and confidence issues and feelings of helpless/hopelessness, this system is bulletproof screen and unless you are fortunate enough to have family and friends who can fight for or at least with you, it unlikely you will break through.
All we need is to be treated with the same regard and consideration as we are with physical health. Yes the waiting lists are too long and the budget too small, the staff too few and the need too high. But we’re not asking for miracles, just understanding and respect.
Living with Dissociation is very lonely. You are constantly misunderstood and often unable to make yourself heard.
One way of thinking of about it is that it is in many ways the opposite to anxiety. I don’t mean we don’t feel anxious, of course we do! Excessively anxious at times; suffering depression and clinical anxiety are common accompanying conditions to DID. What I’m referring to are the visible symptoms of anxiety. Instead of visibly panicking, becoming distressed and frightened or jumpy and paranoid, a dissociative will withdraw. A sudden loud noise which would cause a person with anxiety to jump and become nervous, would cause a dissociative to instantly zone out, go into ourselves in an attempt to protect ourselves from things we can’t run from. That’s what it’s all about in the end; protection. A person with extreme anxiety may feel compelled to run away, whereas a dissociative may feel internally run away and hide, leaving the body to go “auto” whilst our minds are safely tucked away.
That’s not to say we can’t panic and run with the best of them! DID is nothing if not complex and our mind’s responses to any situation are unpredictable at best. There many ways we can dissociate – some more common than others. The problem comes when I’m terrified, genuinely terrified, but the way I deal with that is to hide inside myself, go into autopilot and hide away, which means I appear perfectly calm and normal on the outside, while inside I’m screaming and crying in a corner for someone to come save me. If I don’t go into autopilot but still internally run and hide that’s when I become unresponsive and “zoned out”, other times it might trigger a switch and someone else will take over for a while. I find that unless I’m dangerously zoned out, most people don’t notice the sometimes too subtle transitions between normal me and autopilot me, which is the whole point.
There have been 3 separate occasions when this has happened at A&E. 2 of those occasion’s I was actually brought in due to my DID and once, the most recent, I panicked while in there for a physical problem. On each occasion no one had a clue what was wrong, or even considered my problem was a mental health problem assuming instead I had hit my head or taken drugs. Meanwhile I was unable to explain the situation, after all if I was in a position to calming explain the problem at hand there wouldn’t be a problem to explain!
The first time I was 17 or so, I forgot who I was, where I was, everything. Complete memory loss. If that had happened at home there wouldn’t have been such a drama, it’s happened plenty of other times without authorities getting involved. Unfortunately on this occasion I was in a town centre. Eventually I was noticed, acting strangely, and the police were called who in turn, assuming a drug overdose of some kind, called an ambulance. I don’t know how long the whole episode lasted, all I know is after checking my blood and limb reflexes they sent me home with my parents (having found ID in my purse). No consideration of mental health needs at all.
The second time I was older and in the middle of an intense psychotherapy course, I was walking down the street when I experienced my first body flashback or physical flashback. I’ll not go into details, just suffice to say there was pain involved and it was unpleasant. Again an ambulance was called, gas&air given and rushed off to A&E. When the flashback ended I immediately zoned out to extreme levels, I had no idea where I was and nothing was real to me. I walked out of hospital. My partner found me wandering down the road on his way to hospital from work, he picked me up and took me back to reassure any concerned staff but we found that no one had noticed I left, even my coat was in the same place I dropped it in the middle of the floor.
More recently I was taken to hospital with a physical problem, and whilst waiting to be seen I experienced a panic attack swiftly followed by complete memory loss. They assumed I’d fallen and hit my head when no one was looking and when I came back to myself and was able to explain a little better they were unconcerned and left me to it.
There have been many other times as an inpatient, in wards after surgery for example, where my dissociation went completely unnoticed. I would be zoned out, inside I was screaming, panicking, losing my grip on reality, but because outside I seemed calm and not at all distressed the nurses didn’t notice.
These are our front line healthcare workers, the people who are trained to spot the symptoms and either diagnose and treat or refer to the relevant department in the hospital yet they seem to be dangerously lacking in mental health training, unable to spot the symptoms of a potentially dangerous mental health condition and give the necessary care, or if you like “first aid” – its simple to do, you just need to calm and reassure, take away the threat and help to ground. Once the person is centred and more self-aware you can get to the bottom of what triggered the episode and if further steps need to be taken to ensure continued safety.
It’s not the fault of the staff, it’s the lack of training they are given. It’s left to those who specialise in mental health to have the mental health training but who will refer people in need if our primary care workers can’t recognise someone in need of help?
There’s a rush of noise around me, inside me, surrounding and suffocating me. The lights are bright and yet I can’t seem to see anything. I’m trying to decide whether my chest is too heavy or the air is too thick to breathe when a sharp pat on my knee makes the noise jump into overdrive and I look for the source. My husband is sitting next me and talking, he looks into my eyes and talks and he wants me to answer him but I didn’t hear what he said because the noise is so loud. Why is it so loud? Am I really still sat on the couch? I can’t feel my legs – yet I felt him pat my knee so I must feel my legs….now I’m confused, are my legs there or not? I reach to touch them and notice my hands instead, are they really mine? They seem to move where I want them to, or are they copying me somehow? Are these someone else’s hands and they are copying what I want to do? There’s that noise again why won’t it go?! I need to talk now he’s waiting for me to talk, but what did he say? Why is this air so thick I can’t talk through this air I can’t breathe it. I need to say words I need to tell him something, but what? I need help I’m stuck I’m too far away how can I talk to him when he’s so far away. Nothing is happening no words are coming out, is my mouth still there or has that gone away too?
A brief description of how it can feel to be zoned out. It’s noisy, bright, distant and numbing. Too much stimuli at these times can be more damaging than helpful, in this situation quiet and calm is needed to enable the dissociative person to focus on one thing at a time. Too many things happening will cause more confusion and send them into a deeper dissociative state; too many people trying to talk to them, too many different sensory attempts at getting their attention i.e. strong smells, loud noises. The main danger in this situation is that realistic perception is very low, and most things will be filed into one of two categories – mildly interesting or highly threatening. You want to be considered mildly interesting and non threatening in order to guide them back to a more coherent state. How you guide them safely back to themselves and to a coherent state of mind depends a lot on your relationship with them – doctor/nurse, relative, partner, stranger or friend. I trust my husband completely, but he if he were to be too forward, too loud or too impatient in his attempts to ground me I would go onto “red alert” and either break free enough to run away in blind panic or else retreat so far within my own mind I’d be unreachable for quite some time. For myself the best people at grounding me are my children, just by being in the room they draw my attention and I usually simply watch them play and gradually become more and more aware of their surroundings and myself until I reach a point where communication is much easier. All my husband(or whoever is with me) has to do is sit and wait until I am ready/able to talk to him again.
The main point to remember is that when zoned out everything, and I mean everything, is both amplified and very distant at the same time. Everything is distorted, nothing is real and yet anything can be a threat. The aim of ‘grounding’ is to reintroduce logical thinking and reinforce the safety of the environment and situation. So think, what is safe? What do any of us consider safe? Familiar faces, comforting objects such as teddies and books, soothing music if appropriate(remember the noise issue!). In contrast, strangers, unknown objects, unfamiliar places, these things are not going to help ground a person floating half way between a panic attack and oblivion.
We are all different, we have all experienced different things, we have this condition for different reasons and we have different triggers, but ultimately we are all the same in one crucial way – we just want to feel safe.
I would like to make this loud and clear. This is hard. Living with this condition is hard. At times it feels almost impossible. And it isn’t convenient, it doesn’t go away when friends come to visit or when a special celebration comes around. It doesn’t leave you alone after a long day so you can relax and wind down before bed. It doesn’t co-ordinate its schedule with yours so that you can have a day off now and then. It’s full on, it’s all the time and it is hard.
The hardest part it that it isn’t and can never be the only thing going on in your life. Life goes on, family, friends, job, school, whatever you have going on will happen regardless and make the usual demands of time and energy. The thing that I think most people don’t realise is the sheer amount of energy DID takes from you. I suppose it makes sense on a mechanical level because instead of one set of thoughts, emotions within one personality your brain is maintaining multiple sets of thoughts and emotions.each with separate personalities. Instead of directing all our energy towards simply being ourselves that energy is divided. Perhaps then what also makes sense is number of headaches I get. I don’t know if others with DID get this but I feel as if my head is trying to turn itself inside out on a nearly daily basis. There are other issues connected to this such as an aversion to sunlight due to sensitive eyes but a lot of it a purely mental headache. Doctors call it a tension headache which I think is Dr speak for “we don’t know why you have a headache”.
The other part is the noise. It can’t be specified any more than that, it is just noise. Sometimes voices, but mostly noise. I guess that’s what comes with being a walking foster home, I mean, how many kids are ever quiet? Because of the internal noise, external noise is a no no, I just can’t handle it, it seems amplified and makes my head hurt even more.
You become adjusted to it all, I can’t remember life without all these things; the headaches, the fatigue, and aversion to noise, but living life like this everyday doesn’t make it easier. In fact I’ve found it gets harder because as you get older you become more and more aware that other people don’t have these problems, these constant drains on their resources. I suppose everyone has something to cope with, everyone has something that makes their lives difficult and it’s always the mundane constant things that cause the most hardships.
DID, like every mental health condition and illness, is invisible. And like all invisible conditions we face the daily choice of hiding the bulk of what we endure or risk losing the interest sympathy and compassion of those around us through mere repetition. People do tend to respond more readily and persistently to things they can see – perhaps that is partly why so many people with mental health conditions self harm? An attempt to make the invisible, visible? Emphasis on partly.
Like all people with any condition or illness, I have good days and bad days, even good and bad hours, but the point that often goes unsaid and unnoticed is that no day is without its symptoms. The best days will still come with fatigue and a mild headache and a craving for silence and peace. These are just the mundane physical symptoms that are always with me, on top of which come the many more complex and ever-changing symptoms of dissociating, alters and flashbacks and memory loss. The annoying thing is I often think I could live with the DID quite easily, or at least more easily, if I just had that bit more energy and no headaches weighing me down. My coping strategies work well now, my support network is strong and my routine is set. But until someone manages to tap into that endless fountain of energy and enthusiasm shown by our children, and make it available on the NHS of course, I guess there’s nothing for any of us but to keep marching on.
Often in therapy and by family/friends I have been told how articulate I am and how well I describe and relate experiences and feelings. This is highly confusing to hear and difficult to understand as finding words and putting them together with the right feelings is one of my biggest challenges on a daily basis. For many days now I have had overwhelming feelings but have been unable to put words to them, and still can’t. It is arguably one of the most frustrating aspects of this disorder.
Words have a way of making things seem smaller, more tangible and less significant somehow. Use your words wisely and you can paint vivid images in someone’s mind, inspire hope or fear in equal measure, close the distance between lost friends or even resurrect loved ones in our memories. Words are powerful, and yet….
After living so many years without any words to describe my past, or to explain what was happening in my head, suddenly nothing seems to fit. The whole English language before me and not a word in it describes how I feel. Angry seems too tame, frightened so small, hurt and pain both sound so understated. None of the words available make sense; they under-mime the significance of past events and present mental/emotional experiences
I think that’s why as a teenager I wrote so much, poetry and songs and diaries, all in an attempt to express the feelings, to find the words to explain and share my experiences. That is the ultimate purpose of words after all is it not? To share experiences, to communicate concepts and discuss ideas, to connect with other people on an intellectual and emotional level that can’t be achieved through any other means than language. A problem shared is a problem halved. A problem hidden is a problem magnified. An emotion bottled is a time bomb, regardless of the nature of the emotion in question.
In the past I have resorted to extreme methods of expression in the absence of words, methods which were neither healthy nor communicative beyond the basic concept of “help”. Years upon years of therapy passed without me uttering 10 words that were accurate of my feelings or experiences.
But even having the words is not enough, it’s connecting them to the right emotion at the right time that is the ultimate goal. Something most people take for granted I think. You feel something, you say it. Simple. In difficult situations such as bereavement or a friendship betrayal, you may experience a lack of words to express the overwhelming emotions in your heart and mind, but these are rare occasions and your mind works through them naturally with time. I can say the words, but they do not mean anything to me. All I can hope is that they mean something to other people, and that the images and pictures they paint in others’ minds are enough to inspire that connection and create a gateway to empathy. The words I use may not have the right meaning or emphatic connection with my feelings or memories but maybe I don’t need them to, maybe I just need them to reach others on a level they can understand and relate to from their own experiences. Is that the point? I hope so because that’s what I’ve based the last few years of therapy on.
I used to think that integration would be like a putting together a mental jigsaw puzzle, it might take a while but the biggest challenge was not knowing what the picture was. Now I see that not only do I not know what the picture is, many of the pieces need to re-cut and shaped to fit together, words+feelings is a prime example. They belong together, they just don’t fit yet.