Anaphylaxis and PTSD
CONTENT/TRIGGER WARNING: Anaphylaxis in children; trauma; PTSD
Anaphylaxis is potentially life threatening, so feeling anxiety about it is entirely rational and can prime you to take action when you need to.
Introduction
Although not every traumatic experience will result in PTSD, it can be caused by any sort of trauma, including vicariously (e.g. if your job involves repeated exposure to traumatic events). This is sometimes referred to as secondary trauma.
I have had some indirect exposure to traumatic events through my work but it’s never caused me any health issues.
However, after witnessing my baby suffering a second anaphylactic reaction to food, I developed delayed symptoms of post traumatic stress almost a year and a half later. I do not intend to go into the details of the anaphylaxis itself, except to say that it was during a hospital food challenge, and that my baby came through it.
Instead, this post will attempt to give some insight into some of the symptoms that arose for me as a result of the traumatic experience, and also into a therapy I’ve been doing which is known as EMDR (Eye Movement Desensitisation and Reprocessing). This is a NICE recommended therapy for certain adults with PTSD (see NICE Guidance at 1.6.18-20).
I was in a state of emotional shock during the reaction (not unusual), but I stayed in that numbed state without realising it for a very long time after. I am still processing what happened.
As I understand it, our fight/flight/freeze responses exist to protect us from the threat of imminent harm. Sometimes post traumatic stress is explained as being a prolonged reaction to a threat that no longer exists.
Anaphylaxis is potentially life threatening, so feeling anxiety about it is entirely rational and can prime you to take action when you need to. If a severely allergic person were to go out into the world without any precautions in the way that any non-allergic person would, anaphylaxis could happen at any time. Indeed, even with many precautions, it still happens. It is highly unpredictable.
This is why avoidance of allergens is the first line of defence (followed by preparedness to recognise and treat an allergic reaction). For these reasons, I have found it difficult to rationalise the idea that the threat that existed then has really gone away now.
Some of my deepest fears still linger. However, I am now starting to separate my thoughts/fears from the particular emotions of that particular event (that were supressed even during the reaction) from the general/manageable risks that we face every day.
Symptoms
The NHS website gives an overview and sets out common symptoms of PTSD, as does the charity Mind. I won’t go into all of my symptoms but highlight a few below.
I am learning that there is a balance to be struck between staying safe and living life – keeping control and letting go.
Hypervigilance / being on high alert
The sea change in our lives happened after the first anaphylaxis + diagnosis of potentially life threatening allergies. I didn’t recognise hypervigilance as a ‘symptom’ (with unfairly associated stigma) because this felt entirely natural and typical – almost a given for most allergy parents.
I also think it built on existing new parent anxieties (e.g. difficult labour, difficulties with breastfeeding, which could well be traumas in their own right). Even before the second reaction, my heart would race from the adrenaline kick I got every time I heard my child cry in the night. This instinctive ‘call to action’ still happens, but not as often.
Over time this constant state of ‘hyperarousal’ (with nothing to counteract all that adrenaline and cortisol) led to things like getting irritable with little to prompt it and being easily startled. I was totally exhausted.
When you’re exhausted, emotional regulation is more of a challenge. This is a major motivating factor for me wanting to reduce hypervigilance because it also affects others around me.
I am learning that there is a balance to be struck between staying safe and living life – keeping control and letting go.
Avoidance/dissociation
In the year or so following the reaction, I don’t think that I had the wherewithal to cope with how I felt about what had happened – so I continued to avoid feeling it. I blanked my emotions and only spoke about it in a matter of fact way. I know now that the trauma generated many varied emotions including fear, guilt, anger, and what I can only describe as morbid despair.
I did not notice that I was being triggered into certain behaviours and responses. I was putting so much energy and attention into making my child’s life a safe and happy one, there was little room for having much of a life myself (let alone time for introspection and ‘self care’). I think part of that was avoidance in itself. The reaction made me feel like I’d failed as a mother. I still haven’t stopped trying to make up for it.
I crumpled to the floor in a state of extreme distress reading the perspectives of a grieving mother on the worst of days.
One day in 2020, I read an article written by the mother of a teenage child who tragically died from anaphylaxis. It was intended as a heartwarming piece showing the kindness of strangers. I crumpled to the floor in a state of extreme distress reading the perspectives of a grieving mother on the worst of days. My bizarre over-empathy opened an emotional floodgate and my other half’s concerns that something was amiss were confirmed. This was the first time that I was fully aware I was being ‘triggered’ and eventually, I think that it helped me to realise how unwell I was.
The learning point is really for friends and loved ones of someone who has experienced anaphylaxis (themselves or their child) to keep checking in with them.
It wasn’t as if PTSD wasn’t on my radar. I have a friend who has had similar experiences and we talked openly about it. Most of the time I felt that I was in control of my emotions about what had happened and was coping. Other stresses in life soon showed me that I wasn’t and I had buried memories which were causing me a lot of pain.
Thankfully, my other half (also going through this and more) picked up on something one day and challenged me, enabling me to start recognising triggers and symptoms in myself, and to seek help.
When I’ve talked about PTSD, most friends’ first responses have been “I’m not surprised - with what you’ve been through”. This is validating and has also made a difference in my ability to make progress.
Intrusive thoughts
This is one of the ‘re-experiencing’ category of symptoms so here’s another content/trigger warning.
Though I tried hard to just get on with life after the reaction, eventually I realised that I was thinking about it every day. Snippets of the distressing scene would drift in and out of my consciousness. At first, I don’t think I noticed this. I might have just felt a bit off, or suddenly felt very uncomfortable without really knowing why.
There were (are?!) endless questions in my mind, some gaps in my memory, and many intense fears about what happened, what the outcome could have been, and what could happen again at any time. Sometimes I shut these thoughts down. Other times I can’t, and it leaves me inconsolable – my head feeling like it is trapped in a vice, my throat tightened into a silent scream. Stomach knotted, breath held, heart breaking…
EMDR
There is desperate need for mental health services for allergic people and their families but availability seems to be highly limited.
EMDR is not necessarily a quick fix – I have been doing it for almost a year now with other counselling therapy sessions in between. It takes some commitment. For me, there was quite a lot of preparatory work before beginning to process the trauma of the reaction using EMDR. Sometimes the 50 minute sessions don’t feel long enough to get into processing fully (there are often other issues to discuss and always a period of wind down afterwards for safety using visualisation and breathing exercises), but other times I could not imagine the session being a second longer.
No two ways about it. The process of re-living trauma over and over again to try to make sense of it is highly distressing. There are different methods but essentially the therapist supervises as the client recalls the traumatic event(s) and associated negative thoughts while the brain is bilaterally stimulated (i.e. using side to side (lateral) eye movements or hand tapping/buzzers on each side of the body).
I have recently listened to an interesting podcast by Huberman Lab (@AndrewHuberman, a US Professor of Neurobiology) called “Erasing Fears & Traumas Based on the Modern Neuroscience of Fear”. If you’re interested in it, it’s worth listening to the whole podcast to understand his views in full. On EMDR, he briefly notes that it has been shown biologically to supress or reduce the amplitude of the fear reflex - the lateral open-eye movements being akin to what happens when we (for example) walk forward, and forward movement being generally incompatible with fear (Podcast time stamp c. 01:08:00 – 01:09:00). Supressing the fear reflex, when paired with recall of the traumatic event helps to ‘extinguish’ the traumatic memory. He cautions that this first stage alone is not enough to erase the traumatic memories. There’s also a very interesting discussion about the impacts of social connection versus social isolation on a particular brain molecule (one helps reduce trauma symptoms and vice versa – can you guess which does which?)
EMDR processing is not one uninterrupted session of hand tapping or eye moving. I begin by recalling to mind the worst or near-worst aspect of the memory and the negative narrative that goes with it, and then my mind takes itself wherever it wants to go. We take regular pauses to note the key things that came to mind. Sometimes we discuss (in the broader context of my life and experiences) how I am framing the newly discovered thoughts, what these mean to me, and questions arising. As I’ve made more progress, sometimes new narratives present themselves and rather than ending the session feeling like a shell, I feel renewed optimism about managing everything I have to manage.
I have to box away my emotions week after week following EMDR (on medical advice). At first, this was incredibly hard to do because I was just getting used to letting these feelings out and giving up some control. The enormous effort it took made me even more tired, irritable and short of patience. For me, EMDR seemed to make things worse before it started to get better.
Some sessions are more gruelling than others, but these tend to be where I see the most progress and later easing of symptoms. Consistency of sessions also seems to help with this. (Reading that back it feels like it could be applied to any healing or training process!)
Conclusion
There has been a therapeutic element for me in writing this. Seeing if I could do it without crying (yes) or without being triggered (no). Checking in on my progress - I have come a long way.
I hope it’s not entirely self-serving. If you’ve been or are going through something similar, you’re not alone.
Thank you for reading.
Tags: Mental Health - EMDR - PTSD – anaphylaxis - trauma - processing – food allergy - shock - Oral Food Challenge - OFC
