Managing Medical Procedures
It might have been ‘just a routine blood test’ but that didn’t stop me passing out. Again. From a teenager through into adulthood, even the word ‘medical’ could render me light-headed. I couldn’t bear the sight of blood, I couldn’t even hear descriptions of blood; hospitals and doctors and dentists and needles were meticulously avoided. Someone once described to me an accident they’d had involving a mangled leg, and within 5 seconds I was starting to feel faint. Within ten I was sweating and shaking. Within fifteen I was unconscious in a heap on the floor. For a long time I didn’t understand why I was such a ‘wuss’, as I saw it. As my trauma history came to light, it made more sense, but understanding my fears unfortunately didn’t eradicate them.
Many survivors of abuse struggle like me to cope with medical procedures. For some, any kind of healthcare setting activates the parasympathetic, red alert, freeze response, often involving fainting. For others, it is invasive procedures resembling elements of prior abuse, such as colonoscopies, smear tests and dentistry. And our default response is to avoid. But as trauma survivors with numerous adverse childhood experiences (ACEs), we have a higher risk of developing long-term health complaints, and so our need to access medical care becomes proportionately greater. And yet it’s the thing we fear the most!
I came face-to-face with my medical fears shortly after my breakdown. For a couple of years I had been gradually developing symptoms of gallstones. I was so adamant that I couldn’t cope with going to hospital—not even the GP!—that I endured excruciating pain, night after night: pain so bad that I would pass out with it. Even after months of severe biliary colic, I still refused to seek medical help. In my mind, I just couldn’t. It exasperated everyone around me, and I agreed with the logic of their pleas for me to seek help, but I was stuck in a frozen avoidance that at the time I could do nothing about.
Eventually, I suffered complications from neglecting the gallstones for so long, and one became stuck in a bile duct. After three days of unbearable pain and feeling ill beyond words, a friend called in to see me and the shock on her face was evident. ‘You’re yellow!’ she cried. ‘You need to go to hospital.’ It still took several hours of debate. Eventually she got me into her car and drove me to A&E. I lost consciousness somewhere en route, and I have vague swirling memories of being on a stretcher and hearing someone shout, ‘Straight into majors! Emergency!’ When I woke up I was hooked up to a hundred gadgets and drips. I was disoriented, desperately ill, and scared beyond belief. My phobia of all things medical had led me to within hours of losing my life.
We frequently receive questions via the PODS helpline, by email or in person about how to manage medical procedures. Most survivors have been met with almost universal misunderstanding: ‘Oh, nobody likes having to go the dentist, or have a smear test!’ people say, and our terror is reduced to the level of needing to pull ourselves together, get a grip, and just get on with it. We often feel ashamed that we have such strong reactions, which we can’t control and which seem so out of proportion to other people’s. We can end up feeling that we’re just being childish, or attention-seeking—that we’re just, basically, ‘soft’. I remember one nurse saying to me, when I told her that I wasn’t keen on needles and often passed out during blood tests, ‘Oh, for goodness’ sake—it doesn’t hurt, and I have to do dozens of these every day!’ It’s pointless to try to explain or emphasise that we don’t mean to pass out. And so we can feel shamed into silence.
A breakthrough for me was when I began to understand that my ‘reaction’ (some would say ‘over-reaction’) to all things medical was my brain trying to keep me safe. It wasn’t that I had some defect in my character or that I was being ridiculous and pathetic. Due to traumatic experiences in childhood, my brain had become sensitised to these things and so the merest hint of anything even vaguely medically-related, and my ‘smoke alarm’ (the amygdala) would sound and I would either be activated into a fight-and-flight terror (‘I can’t do it! I can’t go! And don’t try and make me!’) or the freeze response and syncope (fainting). It was my brain’s way of managing a situation that it perceived to be life-threatening. Understanding this helped me stop beating myself up for it, and allowed me to start exploring what it what about doctors and hospitals that caused such overwhelming anxiety. Although everyone will have individual differences, many of us struggle with the following issues:
1. We fear being out-of-control.
The entire experience of abuse is one of being out of control, and one of the ways our traumatised brain tries to manage is either by being in control of everything and everyone, or by avoiding situations where we don’t have control. Powerlessness is the very essence of trauma, and there are few things more powerless than anaesthesia or high levels of sedation. We have to trust ourselves—our bodies!—into the hands of strangers and trust that they will not abuse us again. Our front brains may be able to believe this, but our survival-based back brains are just doing their job when they sound the alarm and overwhelm us with feelings of wanting to avoid it at all costs.
2. We fear ‘getting it wrong’
Very much linked with fearing being out-of-control, medical procedures often place us in settings where there is a strong, authoritative hierarchy structure, reminiscent of childhood. We feel we have to do what we’re told. Hospitals in particular have strong cultures of rules and regulations, of protocols and procedures, and if we’re unused to them it can seem particularly daunting. For many of us, ‘getting it wrong’ as a child led to dire consequences, or at the very least ‘getting it wrong’ makes us feel out of control. The hospital or clinic environment, which has strong rules without always being very good at communicating those rules to outsiders, can trigger in us a sense of panic and throw us back into a developmentally younger state of mind.
3. We feel overpowering shame and vulnerability
Being naked, being examined, being touched—even for a non-traumatised person, this can be a difficult experience. Embarrassment is quite normal. But for those of us who have been sexually abused, the embarrassment ramps up into extreme shame and can feel like a matter of life-and-death, because that is how our back brain sees it. Such powerful shame is extremely aversive—it activates our entire spectrum of survival defences and makes us want above all else to make the feeling go away. It’s not surprising that many of us, in just anticipating it, retreat into a resolute stance of ‘I can’t—I just can’t!’ because it simply doesn’t feel safe.
4. We fear being triggered
When we replicate body positions, or undergo procedures, that are similar to those during the abuse, our back brains cannot distinguish between the harmful touch of abuse and the healing touch of medicine. We can end up feeling the same feelings, and having the same reactions, that we had at the time of the abuse. Not surprisingly, we can end up feeling that we’re being abused all over again, and we fear losing control over our defensive instincts—we fear being triggered into a fight, flight or freeze response, and with DID, switching to another part of the person.
5. We lack practical and emotional support
Difficulties in relationships are a hallmark of trauma survivors—not only does the trauma or abuse impair our ability to trust others, but as we struggle with the fall-out from trauma, we are often abandoned. In addition, many of us, having grown up in abusive environments, do not have the family support that a lot of people take for granted. When it comes to having to undergo a medical procedure, therefore, we may lack not only the emotional, moral support of other people willing to come with us to help reassure and settle us, but the practical help of lifts, aftercare, and advocacy. Even if we do have some supportive relationships, many of us feel intense shame and aversion at the thought of asking for help. When we’ve been abused in the past, there was always a ‘catch’—so what will the payback be if this person helps us? Will we be forever in their debt? How do we have to repay that debt? Or we feel too ashamed at the thought of them seeing us weak, vulnerable or triggered: many of us hide our difficulties even from close friends, and to let them see us at such a time as would risk revealing more about our struggles than perhaps we would wish.
6. We fear our bodies’ reactions
If during childhood we have experienced high levels of pain coupled with fear, our pain signalling system can become disrupted and as adults we can experience pain at amplified levels compared to non-traumatised people: we feel as ‘level 10’ what other people might just feel as ‘level 5’. This can make post-operative pain far more difficult to handle, and coupled with it is the usual ignorance from doctors and nursing staff that we have a sensitised response—the tendency is to assume that a set amount of morphine will have the same effect on everyone. Medical procedures can therefore be far more painful for us as trauma survivors than for other people, and pain in itself can be a trigger of memories of pain as a child, especially when torture was involved. Different parts of the personality can also react differently to medication and it is not uncommon to have atypical reactions to many drugs, involving under-reactions as well as over-reactions.
These are just some of the difficulties we face as trauma survivors in handling medical procedures. Although the default response for many of us is avoidance—do everything in our power not to go to the doctor or dentist in the first place, let alone agree to treatment!—as we age, some level of medical care will almost certainly be inevitable, and so we have to find ways of managing it. The following coping suggestions are by no means exhaustive but are offered as an introductory insight into the options available to us.
Reframing is all about getting our front brain—our logical, rational, planning, human brain—to exert its influence over our survival-based back brain. The primary role of the back brain is to keep us safe, and when we’ve suffered trauma it tends to dominate so that our focus is more on danger than it is on daily life. It shouts the loudest for attention, warning us of every possible danger and interpreting neutral stimuli as threat. It performs a valuable function, but needs taming. The role of the front brain is to inhibit the reactivity of the back brain and to take a calmed, balanced, thoughtful look at a situation and to assess in detail whether something constitutes a threat. When it does that, it calms the back brain and gradually turns down its responsivity so that we’re not reacting out of fight, flight or freeze to every new situation. That’s exactly what needs to happen if we’re going to undergo a medical procedure, because the back brain will be on high alert ready to interpret what’s happening as being dangerous.
So reframing is about bringing the perspective of our front brain into the mix and to keep reminding ourselves, for example with a mantra, that we are safe now. We can say things to ourselves like:
- This feels like the abuse, but it’s not abuse. I’m having this procedure to help me, not to hurt me.’
- ‘It feels like I’m going to be out of control, but I do still have a lot of control, especially if I plan well.
- ‘I don’t feel like I can trust anyone, but there are lots of safeguards in place in a hospital to make sure that no one will abuse me while I’m unconscious or sedated, so it’s highly unlikely that that will happen.’
- ‘I am in someone else’s territory, and I don’t know what the rules are, but I’m still an adult and I’m not a prisoner here—I’m a customer.’
- ‘My needs are just as important as the next person’s and it’s okay for me to ask for help and to say what I do and do not want.’
- ‘I know I feel powerless in this situation, but there are lots of things I can do to exert my power, for example by managing my thoughts and practising self-soothing.’
We tend to think that these are nice things to say—but they won’t make any difference! That’s because we say these things once or twice, don’t feel any differently, and so assume that they don’t ‘work’. But the reality is that they don’t work ‘yet’. The brain needs lots of repetition to develop new patterns of thinking—most things that we learn (walking, talking, writing, reading, sport, music etc) are learnt through lots of repetition and practice: no one expects to be able to play Beethoven’s Moonlight Sonata the first time they sit down at the piano. It takes time to learn, because it takes time for our brains to build new neural networks.
The ‘voice’ of our back brain is very loud and very insistent because its job is to sound the alarm and it wouldn’t be much of an alarm if it were weak and silent! The ‘voice’ of the front brain however is much quieter and it wins the day by constant repetition and perseverance. If we want the front brain to turn down the back brain, we have to keep on keeping on—we have to be persistent at saying these things, out loud, to ourselves many, many times a day. Whenever we feel that sense of panic and ‘I can’t!’, we have to speak to ourselves calmly and kindly, and say, ‘I know right now I feel I can’t go through with this, but that’s my back brain talking. My back brain feels like this smear test is like the abuse happening all over again, but the reality is that it’s just a smear test and I’m having it to safeguard my health rather than to be hurt…’
If we do the opposite, and react to our sense of panic by reinforcing it—by saying, ‘It’s like being abused all over again!’—then our back brain will pick up on that belief and sound the alarm even more. We will then panic because we’re panicking! In reality, at the moment of panic, we have a choice to move forwards or to move backwards. There is no neutral option—we will either increase the panic, or decrease it. Every time we reinforce the panic instead of contradicting it, we make it harder for ourselves. That’s why it’s really important to start to take control of our thoughts, even though they appear to be out of control. Thoughts do just arise out of nowhere—but once we think them, we have a choice as to what to think next. Do we think something that will reinforce our fears, or something that will calm them? That’s the nature of reframing.
Planning is 80% of the battle! Planning involves the use of our front brain and a sense of time perspective. Planning helps us to see that this event will happen at a certain point in the future, and therefore there will be another point in the future at which it is also over. Good planning therefore helps to create a boundary around the feared event as something containable and finite.
Planning is the opposite to avoidance. Planning accepts that this event is going to take place and then garners all of our resources to make it go as well as possible. If we avoid thinking about something we fear, often when it does happen it is indeed traumatic—because we haven’t put anything in place to manage it well. There is a huge spectrum of possibilities in every future event, and we have a lot more control over the outcome than we realise—certainly a lot more with planning than we have with avoidance!
Planning involves thinking through every step of what is going to happen, and asking: ‘What can be done to make this easier to handle? What do I need?’ For example:
- What can I say in advance to the staff involved in my care to communicate my situation and what I want to happen? Can I give them a Dissociative Identity Disorder: Information for Professionals leaflet?
- Can I meet up with them in advance so that I know who they are and what all their roles are?
- Can they walk me through exactly what is going to happen and show me where everything is?
- How will I communicate that I want them to stop during the procedure, especially if I become frozen and can’t speak? How can I communicate if I’m in too much pain?
- What can I ask the staff to do to make it easier for me?—Do I want them to explain what they’re doing, or distract me by talking about other things?
- Can we discuss what I would like them to do during the procedure if I start to drift off, or switch completely?
- Is it possible to have a separate room or ask to be on a single-sex ward? (Extra care is given to people who communicate their need for it most loudly!—sometimes therefore it is necessary to kick up a fuss and wave around scary diagnostic labels like DID to elicit extra levels of support that otherwise the staff would routinely dismiss. Having a stack of DID Emergency Information Cards and Information for Professional Leaflets (free from PODS) to give out can be really helpful.)
- What care do I need to give myself before, during and after? Do I need some time off work? How am I going to reward myself afterwards for having gone through with this? How can I make sure I’m well rested and nourished beforehand, as well as after?
- Who do I need to provide support? Is there one person I want to ask, several people covering several roles, or do I want to do this on my own? What do I need to say to each person to communicate what I need from them? What are my expectations of them? How will I handle it if they don’t meet my expectations?
- What practicalities do I need to think through, for example, what time do I need to leave, is there parking, do I need change for parking, do I need a sick note, is it ‘nil by mouth’ from midnight, what am I going to do about meals and fluids afterwards?
- How am I likely to feel before, during or after? Do I need help with this in the form of anti-anxiety medication?
- What pain relief or other medication will I need afterwards? What about follow-up care? What about a debrief with my GP?
The key to planning is to break the ‘big scary event’ down into manageable chunks, each of which is solvable on its own. If in the planning you can’t think of how to deal with something, go onto another aspect and come back to it later—often our minds will block us from thinking about something when it’s too much, but once we’ve gained a bit of confidence by planning one area, it is easier to see a solution in others.
Planning can also involve visualisations, which can be incredibly powerful at preparing the brain and instructing it how you want it to react. It’s important for the visualisations to be positive—seeing yourself in the hospital bed surrounded by caring staff and feeling settled and calm, rather than imagining worst case scenarios. The aim is to be able to imagine a part of the procedure and be able to feel calm and in control, knowing that it is going well and that you are coping. It can take a lot of practice to achieve this, but it then makes a massive difference during the actual event—the brain has already ‘practised’ coping and remaining emotionally neutral, and will veer towards fulfilling its ‘script’ rather than reacting on its own at the time. This is how successful people such as sportsmen and women, business professionals and elite military personnel prepare for success in their respective fields—playing in an important cup final, delivering a keynote address, fulfilling a combat objective. They prepare themselves mentally with visualisations and plan what they are going to say to themselves (their self-talk), how they are going to feel, and what they are going to do. The same technique can be used in any stressful situation.
Regulating or managing our emotions involves asking: ‘What do I need to feel calm and able to go through with this?’
The answer to this will be as individual as people are unique, but it is often a question that we don’t even ask. Feeling powerless and out of control, we assume that we will just feel overwhelmed, and it sometimes doesn’t even occur to us that there are many things that we can actively do to increase our emotional capacity and stay within our window of tolerance. It can take a lot of trial and error, but even if the first ten things that we try don’t help to regulate us emotionally, that doesn’t mean to say that the eleventh won’t. Again, it is all about persistence.
- Is there some particular music that you can play through your earphones to help you feel calmer, or to distract you?
- Is there a person who is good at calming you? Do you need someone to hold your hand? Talk to you? Or just be with you?
- Breathing is a key way to calm the body: breathe slowly and deeply, and focus on the sensations of the breath filling your lungs and then how it feels to exhale. It is the out-breath in particular that helps physiologically to calm us as it activates the parasympathetic nervous system (whereas the in-breath and holding the breath activates the sympathetic nervous system and its fight/flight response.)
- Does doing mental puzzles help to distract, for example counting backwards in 7s, playing Sudoku or games on your phone? Before many procedures, there is an unspecified amount of time to wait, which with the sense of dread, can be the worst to deal with. Can you figure out roughly how long this might be (for example, 30 minutes, one hour, three hours) and then plan how you are going to spend the time? If you are prepped for surgery lying on a gurney, there is a limit to what you can do, but could you play a podcast through your earphones until it is time to go into theatre? Can you plan a playlist and know that by the time you get to track six it will all be over and done with?
- All of our basic, innate survival strategies come out when we are highly stressed and threatened, and so can you roll with this rather than resisting it? Can you allow yourself for example to have a soft toy to cuddle? It is okay in these situations to be vulnerable and needy!
- Can you write out reassuring mantras on some cards, and keep reading them:
- ‘I’m going to be ok.’
- ‘I can do this.’
- ‘I’m proud of myself for coping with this.’
- ‘No one is hurting me—they’re helping me get and stay healthy.’
- ‘This going to be over soon.’
- ‘Keep breathing.’
Many trauma survivors who successfully cope with a medical procedure through utilising the above strategies still however forget one crucial part of the process: the aftermath. Often we are so focused on just ‘getting through it’ that our planning doesn’t extend to how we feel afterwards. Other people, supporting us in the run-up to the procedure and during it, can also forget that we also need their support afterwards. Aftercare is therefore just as important as everything that has preceded it, especially so that we don’t end up feeling that it is a reenactment of the abuse itself, where after the ‘bad thing’ happened, we were left to fend for ourselves.
I’m not pretending for one moment that medical procedures will ever be easy for trauma survivors, but there are lots of things we can do to stop avoiding them and then to manage them when we do need them. The freeze response of trauma will tell us that there is nothing we can do, that we are powerless to act. Instead, we need to realise that we are powerless no longer, and that there is a lot we can do, both externally in terms of planning, and internally in terms of reframing and regulating, to help us to cope better. Every time we successfully navigate a difficult event in our life, such as a feared medical procedure, it can build in us a sense of efficacy and agency, a self-esteem that we did it, that we managed it, and that we could cope again if it were to happen again. This in itself is very healing and is all part of the process of reframing our experiences so that we see ourselves, not as powerless and overwhelmed, but as courageous people with the capacity and resilience to cope with whatever life throws at us.