Showing my age, I know, but I love this song! And it asks such a fundamental question: Who are you?
Our answer/s to this are pretty revealing. Do you think of your name? Your gender? Your role in a family? Your professional title?
Are you just the one thing? Or many? And are you the same You you were 10 years ago? 10 years from today?
What if something happens to stop you from doing the things that help define you as You? For example, if you say you’re health professional, what happens if your job goes and you can’t find another? What if you’re a painter and lose your eyesight? An athlete who can’t train any more because of a horrible car smash?
Can you still be You when you can’t do?
What if you’re a person who lives with pain and pain gets in the way of doing what you love? Are you still You? Well, this is one question qualitative research has started to help answer. For example, Packham and colleagues (2020) carried out a secondary analysis of interviews undertaken with people with complex regional pain syndrome (CRPS). In this study they identified that participants had to renegotiate their social identity and participation because they had limited control over their symptoms along with negative emotions towards their painful limb. The renegotiation included, for these participants, a need to redefine and reinvent a sense of self to include sexual intimacy and being an intimate partner.
Voorhees (2023) examined the way people develop an ‘illness identity’ as a way of becoming OK with the need to change goals and future plans in light of chronic pain, while a meta-synthesis by Nicola and colleagues (2021) found that threats to self-image and loss of identity were linked to an overarching pain invalidation theme that included stigmatisation and critical self-judgement. Hellstrom (2001) further articulated the struggle that many people experience as they try to keep consistency between who they were and what they do now. Hellstrom’s study further identified that the ‘self’ was in part defined by others as people imposed limits on the individual in light of their pain and the effect on ‘doing.’
The good – and not so good of knowing who you are
So holding a view of You as You has good things – and not so good things – about it. Thinking of yourself as a physiotherapist or an occupational therapist can mean a sense of shared philosophy and values – or it can mean feeling like we don’t fit within our profession when we start adopting ‘psychological’ concepts into our work. Sometimes we adopt a new descriptor for this: ‘psychologically-informed’. And in doing so, we can feel (a) explicit about our stance within our original professional, and (b) part of the new tribe of ‘psychologically-informed’ practitioners. We’re reconciling our emerging practice within the confines of our original sense of self. But it can take some time, and after working with a lot of clinicians entering into pain management, I know the process can be disorientating and discouraging for some. This is because the skills, knowledge and ways of working in this field don’t conform to the norms or expectations we have for ‘conventional’ physiotherapy or occupational therapy.
For people with pain, particularly those who strongly identified as, say, ‘athletes’ or ‘tradespeople’ or even ‘healthy and fit’ or ‘reliable worker’ the impact of pain on the actions we do every day can bump up against the norms and expectations we (and others) have for being ‘athletic’ or ‘a tradie.’
Living with pain that doesn’t go away often involves a lengthy process of getting a diagnosis, hoping there is a ‘fix’ or a treatment that will return us to our old self, in the meantime finding out we can’t do the things – and eventually, learning that this life is what it is, and we need to adjust to it. Those who struggle with the ‘adjust to it’ part are not alone – I have yet to find anyone say it’s easy, straightforward or fast. The ‘adjusting’ can be called a bunch of different names from adapting, accepting, ‘meeting the challenge’ or ‘responding to the threat.’
The process of adjustment, acceptance or whatever you want to call it is a largely internal one. It involves looking at yourself differently, and for quite a time, means feeling in limbo land (waiting for a definitive diagnosis, treatment or even just someone saying ‘it is what it is, we’ve done what we can’). At least part of the process is recognising that there are some things you can’t do in the same way you used to. And this, in turn, means checking in on what that means. If you can’t ‘push through’ the way you did when you were an athlete – because if you push hard you can’t do anything, let alone running – what does that say about who you are now? If you can’t ‘be reliable’ at work because there are days that pain knocks you for a six, what kind of a worker are you?
Our response to this kind of threat to sense of self can lead to pretending things are just OK as if pain isn’t there (hard, hard work, and often fails). Or to us endlessly searching for another thing to get us ‘back to normal’ – getting in the way, meanwhile, of the things we really want like being there for our kids. We can become deeply depressed or angry. We can use all the ways to blot out this sense of not being who we want to be. Mostly these strategies layer more negativity on top of the impact of pain that kick-started this process! But they make sense because no-one wants to let themselves down, right?
An alternative path?
There are different options. Instead of controlling or avoiding or fighting back, acknowledging that life is different now, although it may change in the future. And then taking some time to do some navel gazing (you can do this alone, or with a kind person who will listen – they don’t need special qualifications, just to be kind and willing, and to hold space for you). The ‘who’ you are has many facets – we can polish more than one!
Some questions that can help us in this internal process of adjusting are:
- yes, you’re an [athlete/physio/hard worker] – who else are you?
- no you can’t do things the way you did, but are there other ways of doing things that lead to the same result? Does doing it differently mean it’s less or wrong, or is it just different?
- how have you changed your ‘doing’ as you get older? do you still do the same things you did as a kid? a teen?
- if you can find small ways to express your values, what would these look like?
- is there a sense of who you are today that has always been there?
- are there other people who do it differently?
- who wrote the ‘rules’ you’re using to judge yourself? who benefits because of this rule? is the ‘rule’ applied consistently or are there exceptions?
Over a lifetime, we grow and develop, and what we do changes. There is a sense of continuity though, a sense that there is an ‘I’ that’s part of us since we can first remember and will stay until we die. Tapping in to this ‘transcendent’ sense of who we are can give us a perspective that helps us deal with changes in what we can expect from our bodies. The ongoing self still holds on to important characteristics – like curiousity, generosity, compassion, sense of justice, awe and gratitude, connection – but how we express these is open to change. I am me, human and imperfect, with a body that’s changing and living in an uncertain and often chaotic world. I can’t stop aging, and I can’t stop the world from being uncertain. I can be authentic, and I can do small things every day to express the ‘who’ I am in the ways possible and open to me.
I’m indebted to the works I’ve been reading about ACT and self:
Henriksen, K. (2019). The Values Compass: Helping Athletes Act in Accordance With Their Values Through Functional Analysis. Journal of Sport Psychology in Action, 10(4), 199-207.
Schwabach, J., Bartley, J., & Polk, K. (2018). Sorting it out: a framework for increasing mental flexibility and valued action in athletes using the ACT matrix. Journal of Sport Psychology in Action, 10(4), 208-213. https://doi.org/10.1080/21520704.2018.1549638 https://doi.org/10.1080/21520704.2018.1549637
Twohig, M. P. (2012). Acceptance and commitment therapy: Introduction. Cognitive and Behavioral Practice, 19(4), 499-507.
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.
References
Packham, T. L., Wainio, K., & Wong, M. K. (2020). Persons with Complex Regional Pain Syndrome Renegotiate Social Roles and Intimacy: A Qualitative Study. Pain Med, 21(2), 239-246. https://doi.org/10.1093/pm/pnz173
Voorhees, H. L. (2023). “I Was Literally Just Not Myself”: How Chronic Pain Changes Multiple Frames of Identity. Health Commun, 38(8), 1641-1653. https://doi.org/10.1080/10410236.2022.2025702