I’ve just posted part one of this topic here and want to continue with the topic but with a different slant.
As I noted in my previous post, when I had concussion the effects of those symptoms on my sense of self was profound. I struggled with knowing who I was if I couldn’t rely on my usual skills, and particularly those things that I saw as being me. What did it mean for me if I wasn’t curious, reading all the time, and being able to use language?
The impact of getting a diagnosis is pretty big. I’ve had a couple of major diagnoses that have rattled me over my life. The first big one was gestational diabetes – 26 years old, slim, no (known) family history of diabetes, and no signs. It shook me because it came out of the blue, led to significant healthcare I wasn’t expecting during pregnancy including injecting insulin many times in a day, and the likelihood of diabetes later in life. The second was getting a chronic pain diagnosis – I’d thought my pain could be ‘solved’ but no… again, this happened in my early 20’s and has had a profound impact on the way I live my life. Totally unexpected. I’ve had three other significant diagnoses that were also unexpected and have affected the way I live my life and to a lesser extent, who I feel I am, my sense of self.
Most of my diagnoses have, after a while, been absorbed into my sense of who I am. My concussion gradually settled and I don’t have symptoms 15 years later. My prediabetic status remains, but I don’t think of myself as ‘diabetic’. My fibromyalgia is present and I live my life generally without having to think too much about it – but I do talk about living with pain, so it is part of who I am. I think of myself as a person first, with chronic pain as just part of who I am. ADHD (I was diagnosed just over two years ago) has been slightly different and I think a good part of this is because ADHD is about how I process/think/exist in the world. It is integral to how I incorporate and interact with my sensory experiences, and how my nervous system prioritises and deals with executive functioning tasks. I find it harder to think of myself as ‘a person with ADHD’ in the same way as I do ‘a person living with pain.’ In a sense I can partition my pain and how I live with that from my sense of myself. ADHD is about my quirks and the way I attend to things in the world, and how I plan my life – and I’ve never known myself without it.
Now I started thinking about this whole ‘self’ business as part of my PhD where I found that people want to return to a coherent sense of self, even if it was different from what it had been prior to pain. Participants in my study (Lennox Thompson et al., 2019), and in other similar studies looking at pain and sense of self (Bunzli et al., 2013; Griffiths et al., 2023; Johnston-Devin et al., 2021) knew who they’d been and their focus was to resume at least some of that. Rehabilitation that supported them to do what mattered in their lives held meaning and supported them to develop a sense of self that accommodated the impact of chronic pain.
I also started looking at perspective-taking within ACT, where I have been quite challenged by the ideas of ‘self as content’ (the way I’ve been describing ‘self’ above) and ‘self as context’ – or taking a step back from the things I do/feel are ‘self’ and observing my ‘self’ over time. I can definitely see value in taking this observing self as a perspective – though finding this more difficult with the way I integrate my ADHD ‘self’ since my diagnosis. After all, how can my perspective not include my whole neurodivergent processing apparatus?
All of this mulling came to a head recently when I read a post arguing that people with ‘trauma’ might be holding on to their ‘trauma identity’ and need to let go of this. One of the inferences I took from this was a sense that people were almost deliberately being attached to their traumatised self. As if people intentionally stick with a ‘trauma identity’ instead of…? well I’m not really sure. I’m not certain what a ‘trauma identity’ is – and the research I cited in this post isn’t nearly as clear-cut as this social media post seemed to suggest. There’s certainly an impact of trauma (and I’m talking about the kind of trauma resulting in PTSD here) on sense of self – people feel vulnerable, it’s hard to know who to trust, assumptions about how the world works are violated, and PTSD comes with a host of physical and psychological symptoms that wreak havoc on how people live their lives. No wonder people don’t feel like themselves! But is there a sense that people choose to remain stuck in a ‘trauma identity’? And do people see themselves in entirely ‘trauma identity’ terms? I’m not so sure, and it’s not coming out in the studies I’ve looked at.
My sense is that sometimes observers feel helpless when they talk to someone who has sustained significant trauma that’s resulted in PTSD. The symptoms can be overwhelming, and dominate conversations, thoughts, and behaviours. Onlookers can feel like trauma is all the person talks about, and maybe even get a bit fed up that the person is still ‘stuck’ even years after. It’s not that different from when people develop chronic pain – after a certain while, people stop asking if you’re better because the answer is the same: nope, still have pain. The thing is, recovery isn’t a decision, recovery is a process. It takes time, [often] lots of talking to make sense of what happened, and plenty of support to work out what it means and how to do what matters even though symptoms are still there. It’s about working out who you are when life is still upside down. How you can do the things that give your life meaning.
I draw from ACT and the self-as-context perspective when I think about ‘self’ and pain/trauma/diagnoses. Getting some separation between what I do/care about/how others see me, and my ongoing self perspective offers me a chance to consider what I care about (my values) and how I can move towards those values even if my capabilities change. My internal sense of self can’t, I think, be separated from my neurodivergence, because this is how I filter and process my world. But what I do, my actions and the values that underpin my actions, are things I can step back from. I think this approach to selfing from ACT offers people, even those with trauma and PTSD, ways to view the effects of what has happened while building a self that can still move towards values. In the doing of these values-based actions, I think we build a new sense of self and one that accommodates the life we’ve lived.
And no matter what, I really don’t think people who have had trauma and have ended up with pain or PTSD, deliberately ‘hold on’ to that sense of self. It’s simply part of the process of integrating and becoming a whole person who has been through some stuff. The more important point might be how we can help people identify what matters to them – and then how we can help them do those things, because it’s in doing this that we can best help people become their best selves.
Bunzli, S., Watkins, R., Smith, A., Schütze, R., & O’Sullivan, P. (2013). Lives on hold: a qualitative synthesis exploring the experience of chronic low-back pain. The Clinical Journal of Pain, 29(10), 907-916.
Griffiths, G. S., Thompson, B. L., Snell, D. L., & Dunn, J. A. (2023). Experiences of diagnosis and treatment for upper limb Complex Regional Pain Syndrome: A qualitative analysis. Pain Med. https://doi.org/10.1093/pm/pnad111
Johnston-Devin, C., Oprescu, F., Gray, M., & Wallis, M. (2021). Patients Describe their Lived Experiences of Battling to Live with Complex Regional Pain Syndrome. J Pain, 22(9), 1111-1128. https://doi.org/10.1016/j.jpain.2021.03.151
Lennox Thompson, B., Gage, J., & Kirk, R. (2019). Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 1-12. https://doi.org/10.1080/09638288.2018.1517195
Yu, L., Norton, S., Harrison, A., & McCracken, L. M. (2015). In search of the person in pain: A systematic review of conceptualization, assessment methods, and evidence for self and identity in chronic pain. Journal of Contextual Behavioral Science, 4(4), 246-262.