Labels, Trauma, PTSD and Self-diagnosis
In my recent stay in hospital (8th - 14th July '23), specifically the four days in ICU I experienced a mixed bag of emotions. Most were anxiety tinged with frustration and some sadness at the loss of my health. There was also joy at the successes and pride in my resilience both physical and mental.
During that time there was one moment that was the most terrifying I’ve ever experienced. It begged the question: would it have long term psychological consequences for me?
This blog is an opportunity to process that experience by revisiting it, reflecting upon its implications and collect my thoughts, surrounding trauma, labels and self diagnosis. It’s in no way exhaustive or designed to be carved in stone. It’s simply where I'm at at this moment, a week after leaving hospital. It draws on my experience as an integrative counsellor with significant experience of working with clients who’ve been through similar experiences during their cancer journey.
My Traumatic Event!
There was one moment last week in ICU where in one round of fever (I was hitting 40.2 degs) I became agitated as if someone was shouting ‘move’ move’ move’ in my ear. I tried telling this to the nurse who noticed my speech was broken. ‘It was ________ as if ________the words were further ________apart’.
There are three generations of stroke victims in my family and I didn't want to be the fourth. I was genuinely afraid for my life. This wasn’t just a possibility, it was actually happening in real time. A red button was pressed and like panto genie, five doctors and nurses appeared in moments doing all sorts of tests and I began to feel safer as my speech returned. They were unable to diagnose with certainty, this event as a T.I.A. (mini stroke) or anything else. It only lasted a two minutes but to me it was the most terrifying thing I experienced. It was also the most intimate moment of the whole week, in that I felt completely exposed and totally vulnerable. I still feel a resistance to revisit it, to share this deep vulnerability, my brokenness, my shame.
Note to self: I'll have to write a piece on shame, it's such a loaded word, but so powerful once it’s got to grips with it. De-shaming is one of the most powerful techniques I use in therapy.
What is trauma?
I’m going to start by defining trauma as the emotions, thoughts, feelings and beliefs surrounding an event or events that effectively change the way the brain is wired. Please note that the trauma is NOT the event but the psychological effects of the event. Trauma rarely results in a change in personality, but often it changes how we respond to the world. A simple example would be someone who’s been bitten by a dog, then becomes afraid of dogs and avoids dogs, dog owners and places where dogs might be. Incidentally, I was bitten on the eye by a jack russel when I was around eight years old and I still hate the rat like little thugs. Unsurprisingly they pick up on my defensive hatred and view me with equal caution. This of course makes it more likely for me to get bitten again and so my fear is self fulfilling.
It’s very tempting after a traumatic event to self diagnose one of the many forms of trauma. There are many reasons for this which I’ll explore, hopefully without appearing judgemental or critical. I’m going to focus on PTSD which is often self-diagnosed, has good public awareness and easily highlights all the issues that go along with self-diagnosis. It is only one of many forms of trauma.
Post Traumatic Stress Disorder is a serious life changing mental health disorder that requires expert diagnosis, treatment and management. A professional diagnosis is there so that professionals can treat the disorder. Self diagnosis offers no such support.
PTSD was first defined after the Falklands war in the 1980’s. Prior to that in the First World War it was referred to as Shell Shock where those who suffered from it were seen as having weak and feeble character and often shot for cowardice. No wonder mental health issues remain taboo!
Self diagnosis is so common that there are obviously some psychological needs being met. Here’s a few of them:
I believe the main motivation to self diagnose comes from seeking agency and control over an uncomfortable set of thoughts and feelings. They become more manageable when contained in a wrapper with a label, preferably with a medical sounding name. PTSD fits the bill perfectly.
I’ll use the term ‘label’ to indicate a self diagnosed disorder.
Labels allow us to think/ feel/ behave in atypical ways because we have the [label]. ‘It’s not me, it’s the [label]’. This is a healthy approach as it maintains a separation of self (who you are) and the effects of the trauma. It’s the difference between ‘I am broken’ and ‘I am experiencing feelings of brokenness’. Keeping self and trauma separate is essential.
Old trauma often leads to a judgmental belief that ‘I am broken and always will be.’ We start to define ourselves by the label, we become the label. The psychological effect of confirmation bias makes us likely to notice anything that confirms our brokenness, while remaining blind to anything that contradicts it. In this way the trauma becomes reinforced, self perpetuating and part of our belief system.
Sometimes labels are used as a badge or medal symbolising a traumatic personal history, a way of turning the brokenness into pride. ‘I’ve been to hell and back, and survived!’ Just like a veteran’s medal, this also allows recognition and instant connection with others who’ve been through something similar. Using a label as a medal often limits the medal holder to only talking to those with the same medal. ‘Know one else understands’. This often holds the trauma as unfinished business waiting to be triggered, silently making decisions in the background without any awareness.
I believe labels are rarely deliberately used to gain sympathy or favour from others. The exception to this are parents who seek a diagnosis for their child to gain extra resources for them. This is an instinctive parental act and I offer no judgement. It does concern me that children growing up with a label are automatically steered towards certain outcomes often with limited expectations, but that again is one for the parents and educators.
One of the main ways labels are used is as an attempt to communicate the depth of a trauma. ‘It’s so bad, it’s even got a technical name!’ It allows the recipient to recognise the name and possibly acknowledge the depth of the trauma without having any experience of it communicated to them. It is in effect empathy free communication. ‘Yes I’ve heard of that, let's move along!’ Expression is a huge part of therapy and every effort should be made to fully be heard. Journaling, talking, art, dance are all ways to get it out of you. Find your way.
A very common experience when communicating trauma is that others simply don’t ‘get it’. Generally we’re rubbish at conveying emotions and we tend to stick to a narrative of ‘this happened, then this’ etc. This protects the teller from re-experiencing all those uncomfortable emotions. Better to carry on, stay calm and keep busy!
The recipient also doesn’t want to experience the difficult emotions, so there’s a natural resistance in both directions of the communication.
When I ask clients about their friends' response to being told about their cancer, usually the answer is some form of deflection. ‘Oh I had a friend with that’ which is basically saying let's not talk about you, let's stick to known, safe stories of others.
We feel vulnerable sharing our discomfort. We’re no longer presenting ourselves as strong and robust. If we share, we’re being needy, if we don’t we’re isolating ourselves by not expressing an important part of our lives. And so we remain trapped between a rock and a hard place.
Humans don’t like change within our social structures in terms of status and need. Everything is OK as long as everyone holds the line. As soon as someone goes a bit vulnerable the group feels vulnerable and that’s uncomfortable for everyone. Better to stick a label on it and move along.
None of the above is deliberate, it's just our instinctive response but the effect is to isolate and the prospect of that isolation is defended through not expressing our emotions. This leaves them bottled up for another time. Unfortunately that other time is often when something similar happens and it all comes out at once.
On a wider societal note:
The problem with self diagnosis is that it demeans and attacks those who genuinely suffer from PTSD. It dilutes the meaning and impact of those who genuinely suffer. If everyone has the label, then it’s meaningless. Disorders such as depression, anxiety, narcissism have all gone through this process of dilution. Flat, worried and selfish would be better words to use but they don’t have the weight that medical term have. Calling someone a narcissist is more hurtful than calling them selfish. When we label ourselves are we simply attacking ourselves, allowing our inner critic to shame us into getting a grip? We need to be kind to ourselves. This isn’t lazy or indulgent but a necessary self soothing that was once done by our mothers until absorbed into our process. Setting boundaries, asking for our needs to be met and sitting with the discomfort, rather than trying to move away from it, is the best thing to do even if it’s counter-intuitive.
Hierarchy of trauma
A common misconception is that there’s a hierarchy of trauma. Trauma is trauma, there’s no hierarchy, There’s a tendency to upgrade the trauma to gain extra impact. We often compare one trauma against another. What we are actually doing is comparing the event and the consequences of the trauma, not the trauma itself. Two identical children notice that their pet goldfish has died. They're upset enough to cause trauma. One curls up on their bed and cries, the other lifts the goldfish bowl and tries to take it to mummy only to trip and fall down the stairs sustaining life changing injuries. Which has the greatest trauma? The trauma is the loss of the fish and therefore logic suggests it is equal. Realistically no two people respond in the same way so there's no point comparing the trauma. We tend to use consequences to communicate the depth of the trauma which often misses the point.
As a defence mechanism self diagnosis is effective but it's also sticky. Once you adopt the label it's hard to lose it. Labels tend to come from a position of shame (brokenness) in the sense that 'I have the label because I am broken and always have been.' 'How do you know you're broken?' 'Because I have the label'. and around and around we go.
Case study Me! Do I have a trauma?
I’ll use PTSD as a benchmark trauma because it’s in the public awareness and often self-diagnosed.
Given all the above payoffs of self diagnosing and adopting a label, the first point has to be my bias. Am I looking for a label and not looking to avoid one?
Just because I’ve experienced a traumatic event doesn’t mean I’ll experience trauma of any kind including PTSD. Some people do, the vast majority don’t.
Let’s assume I’ve self diagnosed PTSD and I’ve gone to me as a counsellor whose job it is to explore and challenge that self-diagnosis. I often spend a fair amount of my counselling time doing exactly this.
PTSD has various definitions and criteria which surprises most people, so my diagnosis must also be general and a little fuzzy at the edges but the key points remain valid.
I’m not going to define PTSD against C-PTSD (Complex PTSD) or other forms of trauma. It’s a rabbit hole that leads to the bad logic of ‘Because I don’t have X, Y or Z, I therefore must have A, B or C!’ Not having one thing doesn’t make you more or less likely to have another. All it shows is that internal desire to gain security from the label.
PTSD has to relate to a near death or significantly life changing event. The test is whether you genuinely believe you were going to die. Use the ‘Was or Could’ test. There’s a huge difference between ‘I was going to die’ and ‘I could have died’ one is a certainty the other a possibility.
My possible TIA last week hit the ‘Was’ threshold. I believed I was having a life changing stroke. I didn’t know how bad it was but it was happening in real time. I could feel the fear cascading into panic. My chest tightened, my breathing quickened along with my pulse and I became agitated which I presume was my fight or flight response.
That’s the event, but would it lead to PTSD?
Generally PTSD is expressed as Intrusions, Avoidance and Arousal.
Intrusions are intrusive flashbacks and memories. What’s important here is the intrusion part. Having a memory in a quiet moment is part of the natural emotional healing process. An intrusive memory jumps you back to the traumatic event regardless of what you’re doing. There’s also the difference between a flashback and a memory. A memory is when: I’m here thinking of the event. A flashback is when: I’m no longer here but re experiencing the event. Flashbacks are more emotionally real unlike memories which are mainly narrative. Flashbacks are often dissociated memories which means they are like a video clip that’s lost its place in the order of things. The event is there but not how you got there, or what happened afterwards.
I haven't experienced any flashbacks, only memories. I’ve deliberately gone to that memory and explored the just before and just after to keep it from becoming disassociated. This is a useful piece of trauma triage that anyone can do. Just get the whole story, not just the traumatic event.
Avoidance is a defence mechanism. It prevents you from doing certain things in order to avoid triggering flashbacks etc. Sometimes they are known and often not. It’s useful not to make key decisions after a traumatic event. Get someone’s advice. These hidden avoidances can last for years, shaping our lives, effectively letting the trauma drive the bus! Dragging them into our awareness gives us choice over them and control over our lives. Battling avoidance is always ongoing. It’s part of our internal growth as we move towards self-actualisation or wisdom as it was once called.
Arousal refers to a constant state of fight or flight. Continually monitoring for threats. Edgy, jittery, wired and exhausted from all that mental effort.
It’s worth noting that most of the stress comes from the ‘what might happen’ or the ‘what could have happened’ and not ‘what actually did happen’. Our minds desperately want to learn from the experience so we can avoid it happening again. Even when we’re resting the ‘could've, should’ve, would’ve’ ruminations go round and round in our heads. I find the best solution to ruminations is to look for the underlying emotion. I haven't ruminated over my event, but I imagine that the underlying emotion would be fear, attaching itself to many ‘what ifs’.
I was terrified and that’s ok because it was a genuinely terrifying situation. In my experience when I accept and sit with the fear, the ruminations go away.
We can’t change what happened, it’s gone, past and done with. The future hasn’t happened so all that stuff we fret about is just a fantasy, it’s not real, so why worry about it. Most of the stuff that’s actually happening is completely out of our control so what’s left to worry about? Very little! We can change very little but we can change our mental response. That's where the work is.
So do I have PTSD? No. That doesn’t make me immune to it in the future or anything special at all. I do feel a resilience because of my training, internal work that goes along with it and my life experience. Others aren't so lucky. If that’s you, get some help. I recommend the BACP website. Don’t leave it on the shelf making decisions :)
So that’s my little bit on trauma. I hope it's useful. There are many perspectives and plenty of room for all of them. I’m considering this a first draft and I’ll update as my thoughts evolve. I hope there’s some useful points for you and thank you for reading.