It’s 3.00 am and once again I can’t sleep because of pain.
Is this normal? I wonder. Again. Will it ever change?
Physical symptoms are a big part of life for me with DID. Yes, I have ‘multiple personalities’, the ‘two or more distinct identities that recurrently take control of the body’ and I’m not for one moment denying the significance of that or the impact it has on my day-to-day life. But I would say that physical symptoms such as chronic, unexplained pain, headaches and nausea have been and still remain far more distressing and life-impacting for me than the presence of parts.
I have worked hard at bringing my dissociative symptoms ‘under control’ – to work together as a team, to be co-operative and collaborative, to communicate, even to develop a measure of co-consciousness and co-presence. Having ‘multiple personalities’ is no longer really a problem for me. It’s ‘unusual’ by the world’s standards, certainly, and there is much work still to do in terms of integrating my experiences, feelings, memories and internal working models. But much of the time it is manageable, and ok. It’s the physical stuff that isn’t.
There’s a scene in the film The Bourne Identity, towards the end, that has always resonated with me. The film is about a CIA agent, Jason Bourne, who is trained using coercive mind-control techniques to be a secret assassin within a ‘black ops’ programme of the CIA. He is sent on a mission to assassinate a foreign premier, but just at the moment of pulling the trigger he realises that the victim’s children are watching. He can’t do it. He flees, is shot, is found floating unconscious in the sea by a fishing vessel, and regains consciousness with dissociative amnesia. He can’t remember who he is. The rest of the film is his journey of rediscovering his identity, flashbacks and all, and coming to terms with the fact that he is an assassin and that he was coerced into being so.
Then, towards the end of the film, there is a shoot-out between Bourne and another mind-control agent who is sent to kill him. The agent is shot and is dying, and Bourne is trying to extract information from him about his chain of command. The agent bleeds to death, saying, ‘The headaches … Do you get the headaches? Such awful headaches …’
I too had often wondered: does anyone else get the headaches?
Now I know, through meeting and corresponding with people with DID all over the country, that the headaches are a fairly common symptom. They are not migraines. They are not normal headaches. They don’t respond to paracetamol. They don’t respond to rest. They are not hangovers, and they don’t occur as a result of being hit over the head with a lump of wood. They are thick, and muzzy, like your head is being gripped in a vice, like someone has stuffed loft insulation into it so tightly that your head is crammed to bursting with too much mashed-up fibre.
Some people have suggested that they are caused by conflict between parts, and the pressure of parts wanting to switch or ‘come out’. I don’t know if that’s true for me, although it may be true for others. For me it feels more like a car crash in my head: the contents of my mental boot have been strewn about all over the place and everything is aching and bruised from some kind of collision.
Then there is the nausea. For about three years I had nausea every single day. At first we blamed it on gastritis. But it wasn’t that. Gastritis doesn’t tend to get worse in the run-up to a therapy session, or be relieved by talking about certain memories. This nausea was psychogenic. It was linked to events from the past. Mostly they were highly unpleasant ones, memories connected with things that went in my mouth. Sometimes they were memories of actually being sick. There was disgust, and humiliation, and shame. There was sea-sickness, a sense that we were rolling about on violent waves inside, that at any moment a memory of something appalling might come crashing into our consciousness. The nausea for us seemed to represent the moments just before the waves crashed onto the shore. Once they hit consciousness, the nausea withdrew. The link was that direct.
As everyone will know, nausea is horrible. It demands stillness; it commands every last scrap of attention and focus. At times it made living daily life almost impossible. Sometimes food would relieve it, and sometimes it would make it worse. Sometimes food – the taste of something different – would relieve the sense I constantly had of yuk in my mouth. This was a taste, but more than a taste – an actual physical sensation that there was something in there. I could feel it. Memories such as this are powerful phenomena – this isn’t some vague recollection of yesteryear; this is here-and-now re-experiencing, the brain telling us that it is now.
But by far the most distressing physical symptom has been pain. It is so difficult to describe pain, to express it in words, to explain it to another person. Everyone has their own experience of pain, their own thresholds. What if you have never felt pain like I have? How do I describe that?
For a while I attended an outpatient Pain Clinic to try to help alleviate my symptoms, and the conclusion the Consultant came to was that my ‘pain sensing system’ had malfunctioned. He said that early life physical trauma, of which torture played a big part in my first few years, had – using his metaphor – burnt out the circuits. It had left me with an unusually high pain sensitivity, which is why some days even wearing clothes is painful. But the circuitry has not simply been scorched so that it was permanently ‘on’; it has become entangled and disrupted so that some days I don’t feel pain at all – even the pain I should feel. I recently gashed my thumb and felt nothing at all. I couldn’t understand where all the blood was coming from – I literally felt nothing. The same has happened when I have burnt myself, and so I have been unable to administer basic first aid: cold water could have reduced the damage to my skin, but I couldn’t sense the damage, so I didn’t know to do something about it. When the pain hit a few hours later, it got its revenge: from analgesia to hyperalgesia, zero or ten … like much of the rest of my life, my pain levels seem to know only extremes.
But apart from injury pain and general sensitivity levels, I have also struggled with chronic medically unexplained pelvic pain. I called it ‘left side pain’ as it tended to aggregate on that side, but at other times it would spread over my entire abdominal region. This was like period pain, at times a dull ache, at other times a searing, burning ball of fire. It made no sense. It wasn’t cyclical through the month – it could strike at any time. But the pattern we noticed was simply that the less able I was to communicate my feelings in words, the more likely it was that I would be in pain. Fanciful though it at first seemed to us, this physical pain seemed to be somatised emotions. Contact with my abusers, situations in day-to-day life involving powerlessness or threat, difficult issues arising in therapy … all seemed to lead to an increase in pain. It began to act like an air raid siren, warning me about pesky things called ‘feelings’ that were flying in from afar: I seem to have somatised many of my emotions, feeling them not with feelings but with physical symptoms, especially pain.
Other forms of pain also manifested in my life. Other people, when tired, seemed to yawn and go a bit drowsy. When I was tired – or rather when I was too tired – I felt pain in my legs. This was a shooting kind of jolt, a second or two of unbearable ‘electric’ pain. It took me years to realise that this was my body saying it was tired. Once I made the connection, I began to realise that I needed to get to sleep before it happened. Or it became a vicious cycle in the night of being tired, having pain in my legs as a result, and then not being able to sleep because of the ever-increasing levels of pain.
I also experienced many ‘somatic flashbacks’ or ‘body memories’. Like every abuse survivor, I was told not to tell, and threatened with dire consequences if I did. When I did ‘tell’ in adult life – in therapy or to my husband, for example – I was ‘punished’ again with severe pain. This was a kind of memory, a somatic flashback, and often my alters would appear either with a narrative to accompany it or as if reliving the event: the physical torture as a child was being re-experienced in the here and now as an adult. It was horrendous – levels of pain that I just didn’t think were possible, especially not as ‘memories’. I would pass out repeatedly, screaming or crying out in the intervals between the respite of unconsciousness, my husband distraught and helplessly trying to comfort me in between.
Other ‘body memories’ included being desperately cold: I would become chilled and frozen, with even my skin cold to the touch, no matter how warm the room was, or how thickly I wrapped myself in blankets and duvets and hot water bottles. ‘I’m cold,’ would bleat one of my parts helplessly. ‘I’m so cold.’ It was very very real. At other times, I could feel things that were not actually there: sensations like ropes around my wrists, a hand on my shoulder, pain in my genitals. Body memories are easy to dismiss as melodrama or psychosis if you’ve never experienced them, but they are terrifyingly real and disturbing to endure.
Medication rarely helped. At one point I was on a brutal cocktail of drugs, and I cycled through various potent mixes over time: amitriptyline or fluoxetine or citalopram or pregabalin, buspiron or diazepam or propranolol, codeine or tramadol or diclofenac or feldene. Eventually I became so dampened down by this pharmaceutical kosh that emotionally it felt like I was starring in an underwater-based movie: everything sloshed around in slow-motion and seemed distant and blurred. I couldn’t get in touch with anything, and most of the time all I wanted to do was sleep. My therapeutic progress ground to a halt for a few months: I didn’t care enough to put the effort in; I didn’t have anything to write about in my journal; there was just this grey, listless, abysmal emptiness.
Eventually I realised what was going on, and decided that I would rather feel bad feelings than feel nothing at all, and with guidance from my GP I began to go ‘dry’. The withdrawal was terrible. And it struck me all of a sudden: if this is how I feel coming off them, what on earth were they doing to me when I was on them?! I have used medication only at low levels and with care since that time, to manage the extremes at times of crisis rather than as a mainstay of my recovery programme. Medication can be helpful, but it doesn’t replace the hard work of therapy.
So the physical impacts of trauma for me have been numerous, and debilitating. But the good news is that things have improved. Pain is still my number one symptom and the most difficult part of my life to come to terms with. But as therapy has progressed, my body is recovering just as my mind is. I have been learning to manage my pain better: through diet, through exercise, through mood, through self-care, through rest, through appropriate medication and most recently through a TENS machine. I recently estimated that my pain levels are 70% lower than they used to be. There is hope.
I have learned so much lately about the impact on the body of trauma, how ‘body memories’ operate, what processes are at work in somatisation, and how to open and close the ‘pain gate’. Why not enrol on my online course Trauma and the Body: Dissociation and Somatisation and hear what else I have to say? The course is suitable for both survivors and therapists and anyone else involved in recovery from trauma.
Exactly why I’m here. Although not all traumas I recall so no emotion to connect as yet, hoping this is my first step. I think I got diagnosed at 5yrs there’s medical notes somewhere but I never received the help I needed now 37yrs and my body is becoming louder and louder for wanting to release energy causing all sorts of issues.