Recently I’ve been pondering internalised ableism. This term refers to adopting common societal beliefs about ‘normal’ and the converse ‘abnormal’, and consequently judging themselves in light of those norms. It can include expectations and attitudes like shame for being disabled, comparing yourself with ‘normal’ people and being incredibly critical of your own capabilities and limitations as a result. Much of the literature on this topic focuses on autism spectrum and ADHD, and mental health, but there are few papers in the chronic pain space such as Sheppard (2020).
Ableism values ‘normal’ (the majority) over ‘other’, devaluing positive aspects of those who don’t fit ‘the norm.’ Ableism includes stereotyping, prejudice, discrimination, and social oppression. Ableism assumes that ‘everyone’ has the same capabilities, opportunities and expectations – and its effects can be especially insidious in a so-called merit-based career promotion context. Ableism means contextual factors and strengths often aren’t considered, and discriminatory practices can be maintained with little question.
When these attitudes are internalisedthey become implicit (and sometimes explicit) expectations about what a person with a disability should prioritise. Campbell (2009) describes this as ‘the tyranny within’ – with some disabled people believing that striving to ‘be normal’ is both expected and necessary despite the very real impact of the problem.
I see this in two ways in the pain space.
Firstly there’s the general ableism that’s endemic throughout our health system. Chronic pain can represent a ‘failure’ of treatment (‘failed back surgery’ is a great example), it can be considered a complication of surgery (Rosenberger & Pogatzki-Zahn, 2022) – yet when there is no national pain strategy for the 1 in 5 people live with pain lasting three months or longer, it’s almost as if chronic pain doesn’t exist, at least in the eyes of health policy developers. I’ve written at length throughout this blog about the difficulty getting a diagnosis, appropriate treatment (interprofessional being international best practice, yet not widely available in my country). If chronic pain is seen as uncommon, if expectations are that this pain ‘should’ respond to treatment (Sales et al., 2024) – it’s no wonder community attitudes are internalised by people with pain.
The second way I see this expressed is in the relentless internal judgement people with pain can make about themselves. Guilt and shame for taking breaks, using various medications, prioritising health over housework, wanting time out from being social, hiding a pain diagnosis – all the ways people with pain pretend to be ‘normal.’
Little wonder people living with pain hold strong beliefs about what they ‘should’ be able to do. People with pain are expected to adapt in ways that don’t interfere with ‘normal’ people. I don’t know how many times I’ve been into workplaces where employers will not allow simple accommodations such as a standing desk, taking regular brief stretch breaks, or making room for flexible working hours even when doing so has no impact on productivity or others present in the workplace.
What can we do about this? We’re not going to change attitudes and beliefs about chronic pain any time soon. After all some of us have been saying the same things about chronic pain since the mid-1980s… We shouldn’t stop trying to create change but we need to be realistic about inertia. My next points are for both people living with pain and health professionals because it’s less about ‘what’ we do, and more about ‘how’ and ‘why’ and ‘when’ and ‘where’ and how much. Making room for pain to be there AND doing the things, even if this looks different.
I suggest a few things as a starting point for internalised ableism. Going gently and with compassion, because reviewing who you are is always a work in progress and filled with emotion.
- It can be reassuring getting a diagnosisor hearing that your pain is chronic (ie 3 months or longer) and that all the treatment options that are reasonable and accessible have been done. This pain is not imaginary, a moral weakness, a failure in you. Make some time and space to let that awareness sit with you a whileperhaps learn about pain and how humans experience pain, then list the effects pain has on you and who you want to be.
- Take time to grieve. You’ve lost something about yourself you never knew you had and instead you have this stranger invading your sense of self. It’s OK to feel feelings. Those feelings can range from relief (it’s not me just being pathetic) to anger (why did it happen to me?) to resentment (and I have to do all these things I don’t want to do just to get by). All those things you miss are things you value. Not being able to do them the way you used to is a loss. Feeling these things is normalnot a mental illness or weakness. They become problematic when they take over and get in the way of everything else. You might want to talk to a professional about how this feels, or you might not. Either way, grieving will take as long as it takes.
- Consider what you’ve learned about yourself since your pain began. Some people have told me they take life in a more measured way, they’ve prioritised things they value over things others wanted from them and this means they’ve learned about what truly matters to them. Some have told me they’ve learned who their real friends are. Even in the losses (eg “I can’t run like I used to”) can come a flip side of recognising what you love about running – why does it matter so much? This is information about what makes you tick, what makes you YOU. And when you’re ready, think about what you’ve gained – learning about yourself is something that might not have come another way. And yes, it really hurts. Take time to grieve.
- With those things you’ve learned about yourself, what does living with pain NOT interfere with? Are there ways you do YOU but differently? When you look at what you’ve lost, are there ways to express those important values but differently? For example, if going out 4 wheeldriving with your male friends was super important because of camaraderie, were there other ways you also connected with them? Could you still do these things even if not for as long? If it was about getting out in nature, how else could you get out in nature? This is NOT to suggest pain doesn’t change how much you do, how you go about it, or even how frustrating it is not to do those things. It’s about finding different ways to tap into things that make life meaningful. This is where internalised ableism can rear its ugly head… You might see professionals who can help you work through this – occupational therapists are experts in this area.
When we internalise societal expectations and attitudes about people living with pain and how ‘they’ ought to strive to be normal, as people with pain we’re likely to be our own harshest critics. This is not helped by judgements from others, and systems that fail to give us space to establish reasonable limits and accommodations. The reality is that when we live with pain long-term life is not the same. We don’t return to ‘normal’ as it was before pain started. There are things I can’t do without enormous cost, even though I live a really full and rich life. And there is much I do because of my pain that doesn’t look like ‘normal’. On the other hand, there are things I am very good at – as a direct result of living with my pain. But if someone had told me ‘pain can give you strengths’ when my pain first started I would have slapped them. Maybe time, as Sheppard (2020) says, is needed to ‘refuse the future’ (as it was) and to depart from what was ‘straight time’ or that usual trajectory from childhood through teens to adulthood and on to old age. Maybe all of society would benefit from being more flexible about expectations.
Campbell, F. K. (2009). Internalised Ableism: The Tyranny Within. In F. K. Campbell (Ed.), Contours of Ableism: The Production of Disability and Abledness (pp. 16-29). Palgrave Macmillan UK. https://doi.org/10.1057/9780230245181_2
Friedman, C., & Owen, A. L. (2017). Defining Disability: Understandings of and Attitudes Towards Ableism and Disability. Disability Studies Quarterly, 37(1). https://doi.org/10.18061/dsq.v37i1.5061
Riddle, D. L. (2018). Prevalence and Predictors of Symptom Resolution and Functional Restoration in the Index Knee After Knee Arthroplasty: A Longitudinal Study. Archives of Physical Medicine and Rehabilitation, 99(5), 887-892. https://doi.org/https://doi.org/10.1016/j.apmr.2017.12.010
Rosenberger, D. C., & Pogatzki-Zahn, E. M. (2022). Chronic post-surgical pain – update on incidence, risk factors and preventive treatment options. BJA Educ, 22(5), 190-196. https://doi.org/10.1016/j.bjae.2021.11.008
Sales, P. T., Miyamoto, S. T., & Valim, V. (2024). Beliefs and attitudes about chronic pain among public health professionals: cross-sectional study. Brazilian Journal Of Pain, 7. https://doi.org/10.5935/2595-0118.20240031-en
Sheppard, E. (2020). Performing Normal But Becoming Crip: Living with Chronic Pain. Scandinavian Journal of Disability Research, 22(1), 39-47. https://doi.org/10.16993/sjdr.619