I was stoked when I saw that February’s topic was allostasis and allostatic load. In 2017 I wrote a post on stress and allostatic load after reading some of the work by Bruce McEwen, including this excellent primer in Aeon on how stress can make or break us.
Allostasis was defined in the Fava et al article as ‘the ability of the organism to achieve stability through change’. So beautiful in its simplicity for so complex a process! Their definition of allostatic load veered more into academic jargon, but my understanding is that allostatic load is stress that goes beyond what our systems or resources (both biological and social) can handle, which leads to detrimental effects on our health. When things get really bad, when our systems and resources are really overwhelmed and our health is seriously harmed, this is called allostatic overload, or toxic stress.
When does stress, which is not inherently bad, become too much? When does it become toxic? There’s no easy answer for that, no clear demarcation between allostasis - when everything is humming along and we’re adapting beautifully to the stressors in our lives - and allostatic load or overload - when the humming becomes a screech, a grind, or halts altogether.
‘Beyond the direct experiences of individuals are social, political, and economic forces that drive up the risk of ill health for some while sparing others. Some have called this
Structural violence. Such social forces become embodied as health and disease among individuals.’ Reimagining Global Health: An Introduction
Stress becomes embedded in our biology, it changes us. And our biology - us, as biological organisms - responds to stress. We can change stress. We can adapt and strengthen if we have the biological and social resources to do so.
Or we can be harmed and damaged when our resources aren’t enough, or when social forces are driving up our risk of ill health. We live within systems and societies where we may experience inequities, inequalities, disadvantage, stigma, bias, disrespect, or discrimination based on weight, education, income, education, race, ethnicity, gender, sex, sexuality, religion, caste, class, disability, diagnoses, immigration status, or where we live or who we love and are loved by. We may experience violence, trauma (be it personal, familial, or intergenerational; physical, sexual, psychological; acute or cumulative), food, housing, or financial insecurity, or a lack of safe places to move, play, and live joyfully.
More load.
And when all that stress is coupled with constraints in our exposome that also lead to fewer resources to respond to that stress, we are more likely to experience disease and illness and pain and suffering.
The weight of all that load is oppressive.
And then, when we are at our lowest, when we are in the most pain or experiencing the most ill health, we have to advocate for ourselves in health systems that are difficult to navigate and not built with us in mind. More load.
When stress gets to be too much - when it becomes toxic - it affects our health and our ability to do things that promote health - it’s a double whammy. Our health is worsening because we have a toxic load of stress, and we do not have the capacity or resources to care for ourselves in ways that can improve our health. We sleep poorly, eat poorly. We disconnect from the people, places, and experiences that matter to us. We numb ourselves.
More load.
‘When structural violence is overlooked, agency is often overestimated, constraint underestimated.’ Reimagining Global Health: An Introduction
And then, because it is too much, because we can no longer cope with our available personal and social resources, we are to blame. It is our fault. We are somehow deficient. We have failed. More load.
We are blamed despite the fact that most of us have coped for a long long time before we broke under the strain of it all. We adapted and adapted and adapted until we could adapt no more. No matter how long we have been resilient for, when we can no longer ‘bounce back’ it’s seen as a character defect. More load!
When we overestimate agency, and underestimate the constraints imposed by the social, environmental, and political contributors to health and illness - we put all of the responsibility for good health on the individual, with a whole lot of inherent judgment and stigma built in.
We talk about lifestyle choices, even lifestyle medicine, and thereby imply choice and therefore blame when someone doesn’t get better like they should have. When they are not ‘motivated’ enough to exercise or quit smoking or eat ‘right'. When they are not as ‘invested’ in their care as they should be. When they are noncompliant, which is just another way of saying they’re not doing what they’re told (doesn’t that sound awful? And a lot of times they are doing their damnedest to do what they're told at that!).
The implication that this is all a choice, and that if we just made better choices we’d be fine. It is a weight too many of us carry. It’s more load.
And yet we know - we know! - good health isn’t just a matter of choice. That our exposomes aren’t just ‘out there’ somewhere in the ether. That the structures, systems, and societies we live and work and play within and our relationships and connections with the people and world around us, shapes our development, our behavior, our beliefs, our biology. Antonio Damasio has said that our brains shape culture just as surely as our culture shapes our brains (a bit too brain centric, probably, but you get the gist). Fava et al. wrote that ‘a key result of stress is structural remodeling of neural architecture’.
Social forces become embodied as health and disease among individuals, shaping and remodeling our biological architecture down to our very cells. Not only can these forces contribute to pain or ill health, they can also perpetuate pain and ill health.
A brief and incomplete history of some of my load: When there was a shitstorm of stressors, when my pain got worse and there were no explanations for it and I didn’t know what to about it, when my anxiety was trying to one-up the pain in a race to see which could get worst fastest, when I was stuck in a system that was not built for me and did not care about or for me, when I medically retired and my husband got laid off and we lost our financial security and nearly lost our house, when I lost my ability to sit and therefore could no longer engage in the world with everyone else, when I was doubted and discredited in my capacity as a knower of my experiences, when I was accused of malingering and denied care within an adversarial worker’s compensation system that made me prove my pain - over and over and over again - and thus prove my worthiness, my value, my humanity, when my husband and I stopped communicating because we didn’t know how to handle this new pained me, when I stopped being me and felt a stranger to myself, a stranger I didn’t like - in the midst of that malignant mist of pain, that allostatic overload and toxic stress - I was overwhelmed by the deluge.
Most of the time, for most of my life, I’d been able to cope with all the things.
And then, one day, I couldn’t.
I did not choose that. As good as my resources were, when I was in that storm of toxic stress my resources and support simply weren’t enough. It was all I could do just to keep my head above water. To get through the day, next hour, next minute, next moment, next breath. And in trying to just keep my head above water, I was least able to do the things I knew could help. When you’re drowning it’s hard to sleep well, hit the gym, make a nutritious meal, meditate, go for a walk in the woods, connect with friends, engage with things that matter to me. When you’re drowning, you are not safe enough to do those things. You do not have the capacity to do those things. You are just trying to survive the deluge.
We are resilient until we’re not.
My allostasis is humming along quite nicely right now and I’m adaptable af. My resource well is full again, no longer run dry. But even now, if there’s a storm of stressors and my pain and/or my anxiety flare, it is still really difficult to do the things I know will help. My bucket overfloweth with the deluge and I just cannot manage sometimes. All that good, health-promoting, allostasis-inducing adaptability goes right out the window. I just don’t have the capacity for it, despite heaps of motivation to not feel so crappy.
Thankfully, I have a husband who now knows if I tell him my bucket is overflowing that he’s probably going to have to handle dinner. He doesn’t even have to ask, he just lightens my load.
This is not a personal failing, although I long thought it was. That lack of communication during the worst years of my pain was because I believed that sharing my suffering was complaining, that asking for help was weakness, that not being able to cope was a deficiency of character, of grit, of resilience. Which is ridiculous. The stressors I mentioned above were also atop a lifetime of stressors that included physical and sexual trauma, that included sexism and misogyny, bias and stigma. I worked in a male-dominated profession where we were also exposed us to a lot of hard things for which we received little training for in our fire academies or at paramedic school- not just for how to deal with them in the moment, but afterwards, too. I was resilient, for over three decades. Then I wasn’t.
Perhaps the answer is not making us more resilient, but reducing the need for so many of us to have to have so much damn resilience.
‘Healthcare is like any other system, it's just a set of choices that people make. What if we decided to make a different set of choices?’ Rebecca Onie
How can we make better choices?
First, it’s important to do what we’re doing here; being honest with ourselves and having hard conversations about the systems we work within and the choices people within these systems are making (as Rebecca Onie said in her YouTube talk). We are all a part of these systems, social forces that can drive up risk factors for ill health and disease. Systems that cannot be upheld without us. Can we push healthcare systems to make different choices? Choices that strive for more health promotion forces for all of us? That reduce the weight and pressure of our allostatic loads and keep us healthy?
We can recognize the limits of individualism and stop blaming people for their pain or their ill health or for not handling things the way we think is best for them, especially when we do not know what personal and social experiences they’ve had, what supports they can lean on, or what resources they can draw from.
We can listen without judgment, acknowledge distress, validate experiences and responses to those experiences (who wouldn’t struggle facing so much?). That alone can lift an oppressive weight we may not have even known was there. Once that weight - part of our allostatic load - is lifted, it frees up capacity for us to take on new information, we can begin to make sense of our pain and our experiences, begin to make sense of ourselves with pain. When some of the load is lifted, we can also start engaging with things that matter to us, we can begin to adapt - to hum along nicely in allostasis - and move forward.
’Interventions expressly intended to target the root causes of such stigma are much more likely to be successful than approaches that proceed in ignorance of the historical forces shaping and driving pain stigma in the present.' Daniel Goldberg, Pain, objectivity and history: Understanding pain stigma
We can believe people (testimonial justice), even when their experiences don’t fit with what we’ve learned or don’t fit within the dominant discourse (hermeneutical justice). We can recognize that all knowledge is socially constructed, all policies are socially constructed, all systems are socially constructed. And that historically, the creators of knowledge and policies and systems were an exclusive group, the few and the privileged, and many peoples and many ways of knowing were excluded.
We can learn from these other ways of knowing, we can learn from people who have lived with what we are attempting to treat, or study, or understand. Epistemic justice is a way forward. We can reflect on how we know what we know. What is it based on? Who decided? Who was/is missing from the discourse?) We can keep asking questions, keep getting curious about what we don’t know, we can keep learning, and put what we learn into practice on small and large scales.
We can develop more social and community based solutions - and truly embrace our biosocialness. We can connect people with resources in their communities that are meaningful and relevant to them. We can also bring people together in community, facilitating peer support groups or bringing on peer mentors or coaches that can help lighten some of the clinical load.
We all need support and resources that can help lighten the load and reduce some of that toxicity. We all need to feel safe. To have people in our corner we trust, who care about us and are working with us, alongside us. We need social connection and purpose and meaning. We could all use a little more compassion and understanding and curiosity, and less stigma and judgment and blame. We need to love and be loved.
All of us in the pain care ecosystem - patients, health professionals, researchers, educators, administrators, policymakers, carers, employers, coworkers, strangers - deserve better, and can come together to build something that is equitable and just.