Yesterday, I had a meeting with the social worker from AVL. The meeting was a prerequisite from the surgeon before the planned double mastectomy. It was meant to gauge my understanding and readiness for such a heavy and life-altering procedure.
Had I been myself 10 years ago, before I went through breast cancer for the first time, I wouldn’t have thought of the interaction as unpleasant nor would I leave the room wanting for a different type of interaction.
In all probability, a lot of people would say the questions she asked about my challenges and what she perceives as difficulties when it comes to having such surgery done are valid. They fit the “checklist” of what an initial conversation about doing a procedure should be. In other words, it seems to fit the expectations of what an initial conversation should be.
Yet, I went out of that meeting feeling not seen.
After leaving the room, my husband and I took the time to debrief about what we both experienced. I shared with him about my frustrations in meetings such as this where the main premise around the questions was based on the idea of “lack or deficits”.
The way she asked her questions made it seem like I hadn't fully weighed all my options, nor did I do my diligence in understanding what taking off both of my breasts could mean for me physically, sexually, and psychologically, and, what it can mean for my relationship with my husband.
The way the questions were asked seemed to come from the mindset of “you as a patient is a problem to be solved, rather than to be seen in your entirety”. I came out of that room feeling frustrated because she did not ask me first what I had already been doing well to prepare myself for this decision. What I got was a rundown of problems that can be encountered and the questions were on how aware and prepared am I to tackle them. It made me experience being seen as incapable and unaware of how a massive decision can alter my life and our lives.
Perhaps you have also been in a situation where talking to a doctor, nurse, or an expert in the field and you are left with that gnawing feeling of “But did the person truly see and hear me?”
That was what I felt in that interaction.
I experienced it as “I was a person to be given the rundown to on what to expect and not someone who would have already done such a rundown (multiple times even) in her head.”
I can imagine that she probably had encountered numerous women who are very much overwhelmed and would like to know their options about having a mastectomy. In these cases, I would still approach the interaction differently than just going through a rundown of what to expect.
This is where the Latin phrase “Nihil de nobis, sine nobis” (nothing about us, without us) comes to mind.
I don’t know if, in the design of these standard questions and initial conversations, they had consulted women who had decided on getting a mastectomy or have undergone mastectomy. From where I am at, deciding to opt for a mastectomy was not a decision that I made lightly. I can imagine for a lot of women who have been in my situation, this decision was not a whim. It is a massive procedure and choosing to have it done or not is a big decision to make. I do wish that these type of sessions are co-designed with the women who undergo such traumatic events. Nothing about us, without us.
Rather than spending time on what went wrong in the conversation, I would like to offer a reframe of how such a conversation can go. Having taken non-violent communication, healing-centered engagement, and HOPE facilitator training, I would like to approach such conversations from a salutogenic lens.
But first, what do I mean by salutogenic approach or salutogenesis?
The salutogenic approach or salutogenesis is a term applied in health sciences, and more recently in other fields, to refer to an approach to wellness focusing on health and not on disease (pathogenesis).
Salutogenesis is a term that originates from the Latin salus, meaning health, and the Greek genesis, meaning origin. It's a concept introduced by Aaron Antonovsky, a medical sociologist, in the 1970s. Unlike traditional medical models that focus on the factors causing diseases (pathogenesis), salutogenesis is concerned with the origins of health. It seeks to understand what keeps people healthy in the face of stressors and how resilience and well-being can be fostered. At its core, salutogenesis looks at health as a continuum, where the goal is not merely the absence of disease but the presence of vibrant health and well-being.
The salutogenic model encourages a shift in health care from a disease-centric to a health-centric approach, aiming to empower individuals and communities to thrive in the face of life’s stressors. Central to the salutogenic model is the sense of coherence (SOC), a global orientation that expresses the extent to which one has a pervasive, enduring, and dynamic feeling of confidence that their internal and external environments are predictable and that there is a high probability that things will work out as well as can reasonably be expected.
SOC is comprised of three components:
comprehensibility- cognitive component; the ability to make cognitive sense of the world and perceive it as logical and ordered,
manageability- behavioural component; the belief that resources are available to meet demands,
and meaningfulness- motivational component; the feeling that these demands are challenges worth investing in and engaging with.
Another core concept of salutogenesis is the introduction of General Resistance Resources (GRR). These are biological, material and psychosocial factors that make it easier for people to perceive their lives as consistent, structured and understandable.
Some examples of General Resistance Resources include:
Money
Knowledge and intelligence
Experience
Self-esteem
Healthy behaviour
Social support
Ego / identity
Commitment and cohesion with one’s cultural roots
Cultural stability
Ritualistic activities
Religion and philosophy (e.g., stable set of answers to life’s perplexities)
Genetic factors
Preventive health orientation
These help the person to construct coherent life experiences and when these resources at the person’s disposal or in immediate surroundings there is a greater chance for to deal with the challenges of life.
Another way to look at resources are from Asset-Based Community Development (ABCD). Asset Based Community Development categorizes asset inventories into five groups, Individuals, Associations, Institutions, Place Based and Connections.
Here are the distinctions from Nurture Development
INDIVIDUALS – EVERYONE HAS ASSETS AND GIFTS.
At the centre are residents of the community who all have gifts and skills. Individual gifts and assets need to be recognized and identified. In community development you cannot do anything with people’s needs, only their assets. Deficits or needs are only useful to institutions.
ASSOCIATIONS – PEOPLE DISCOVER EACH OTHER’S GIFTS.
Small informal groups of people, such as clubs, working with a common interest as volunteers are called associations in ABCD, and are critical to community mobilization. They don’t control anything; they are just coming together around a common interest by their individual choice.
INSTITUTIONS – PEOPLE ORGANISED AROUND ASSETS.
Paid groups of people that generally are professionals who are structurally organized are called institutions. They include government agencies and private business, as well as schools, etc. They can all be valuable resources. The assets of these institutions help the community capture valuable resources and establish a sense of civic responsibility.
PLACE BASED ASSETS – PEOPLE LIVE HERE FOR A REASON.
Land, buildings, heritage, public and green spaces are all examples of assets for the community. Every place where people choose to be was chosen for good reasons, and whilst people remain those reasons remain. A place might be a centre of natural resources, a hub of activity, living skills, transit connection or marketplace. Whatever the strengths of a place are, the people of the community will be the closest to understanding it.
CONNECTIONS – INDIVIDUALS CONNECT INTO A COMMUNITY.
Asset Based Community Development recognises that the exchange between people sharing their gifts and assets creates connections, and these connections are a vital asset to the community. People whose gift is to find and create these connections are called connectors. The social relationships, networks and trust form the social capital of a community.
Pitfalls and consequences of thinking in the “pathogenic paradigm”
Either-or Mentality
The dominance of the pathogenic/deficit based paradigm in our thinking, designing, research and intervention is so pervasive. It promotes a “binary/either-or mental model”. This thinking tends to simplify life, people, and events that leads to absolutes and divides people into us vs. them. When we get into polarised thinking, it becomes incredibly difficult for us hold space for paradox and nuances. In the healthcare field seeing people as “healthy or diseased” shifts the way care and attention is given to an individual.
Salutogenesis looks at health and disease on a continuum that moves from “health-ease to dis-ease”. We are all moving in the continuum in different ways in different moments of our lives. Putting on the salutogenic lens means asking:
How can a person (wherever that person is in the continuum) continue moving towards the healthy pole?
Focus on Change
In “What’s Strong With You?” a toolkit I co-wrote for Neurdiversity Education Academy, we cited the work of McCaskey (2008) on how the deficit/pathogenic cycle holds the view that once we identify a problem, all we need to do is:
find an expert to analyze it
then find a prescription that will fix it
This starts with a “needs assessment” to a) determine what is not going well b) discover what the needs are and c) choose the actions required in response to those needs.
The strengths-based cycle begins with a more holistic focus. It puts an emphasis on a person’s strengths and resources (internal and external) in the process of change.
It involves:
acknowledging and validating challenges
strengths are identified and highlighted.
According to McCaskey, strengths exploration flips the narrative around the problems as it creates positive expectations that things can be different. It also opens the way for the development of competencies that build on positive experiences.
Moving from Parts to Fullness
When we look at our work from a salutogenic lens, we engage with the people we serve from the lens of “fullness”. In the medical or psychological field, bringing in the salutogenic lens is seeing the person as a whole being with parts that may be challenged and parts that are strong and capable. As I learned from Dr. Shawn Ginwright’s healing-centered engagement approach, “We are more than our traumas”. We are more than the adversity that we are faced with at that given moment.
One of my favorites, Virginia Satir, a pioneering figure in the field of family therapy, and whose work I have benefited from a lot, held profound beliefs regarding the innate wholeness and potential of human beings. Central to her therapeutic approach was the conviction that every individual possesses an inherent ability for growth, healing, and transformation.
Satir believed that people are fundamentally good and that they have the internal resources necessary to face challenges and change their lives for the better. She viewed individuals as whole beings, interconnected through mind, body, emotions, and spirit, each aspect playing a crucial role in the health and functioning of the person as a whole. Satir's methods aimed to unlock the potential within each person, enabling them to access their inner resources and foster a sense of balance and harmony within themselves and in their interactions with others.
When we engage in this mentality and practice of seeing the fullness of the individual, family, community, organization, or ecosystem, we look at what is going strong.
What is going well and how can we continue promoting the vitality and wellbeing of the person, family, community, institution, organization, or ecosystem?
What assets and resources are already available?
I personally liked what Dr. Jeffrey Linkenbach, one of the proponents of HOPE (Healthy outcomes from Positive Experiences) mentioned:
“When we start to look at the world through this positive, hopeful lens, it has a profound impact on the questions we ask, the data we collect, and the way we address health and safety issues.” -Dr. Jeffrey Linkenbach
When we shift our mindsets around the fullness and wholeness of people who are coming to us for support, we ask questions differently, we gather data differently, and we certainly perceive our role differently.
That was a download on salutogenesis!
How is it resonating so far?
Now let’s go to how I would have reframed the interaction I had with the social worker from a salutogenic perspective…
From FLOUNDERING to FLOURISHING
How would your practice change when you start seeing people, organizations, ecosystems with the lens of fullness? That alongside the parts that you perceive to be challenging are also parts that are capable and strong?
What’s strong with me, with you, and with us? is a crucial message that I have been sharing since last year when the “What’s Strong With You” toolkit I co-wrote was published. Rather than just focusing on the deficits, my invitation is to also surface strengths.
In light of the conversation I had with the social worker how I would have approached it like this:
Surface Strengths
Reframing:
Considering that you are here about the double mastectomy and why you are opting to have this procedure done, I can only imagine, given this is not my experience nor have I been in this position, that this was not something easy to decide on.
“May I know what you’ve already explored and what you have done to get to this decision?”
This question allows for the surfacing of strengths. It makes the person be seen with what they are capable of and what they have already done to attend to their problem or situation. This is a great opportunity for the person to be celebrated for their efforts and to amplify what they have found out that works for them. Seeing people through a salutogenic lens means seeing them as capable individuals.
Ask for consent
I would then follow up with this question:
“Seems like you have already taken into consideration multiple things. Would you like to know more about other questions and experiences that other clients have surfaced when they were in this situation?”
This question is integral as it asks for consent before proceeding with giving more information. This scenario can be overwhelming for a lot of people and if there is more information dumped in then this increases the overwhelm and mental load. Asking for consent allows the person to gauge what they are capable of receiving and can probably be offered with:
“This information can also be too much right now, would you rather I send them over to your email so you can take the time to read them at your own pace? You can also email me or set another appointment if you have further questions.”
I would be honest here, asking for consent in situations where people are engaging with me for support is something I am just beginning to practice myself. It’s a deep honoring of:
what is within the capacity of the other person to receive considering where they are at,
how they process information (especially for neurodivergent individuals), and
the mental load that they are already carrying within that given period.
Asking for consent is crucial so we don’t tend to push people past their learning zone and get them into a panic zone (nervous system dysregulation).
Be mindful of the patterns and gaps
This part of the conversation can be:
“After hearing all these, what is coming up for you? What is resonating for you? Are there parts that you want to know more about? Do you have questions bubbling up for you?”
In this scenario, seeing the person with their strengths and capabilities promotes a clearer picture of what the individual have already explored or thought about. It can be the baseline for other questions and asking where the gaps can be. Encouraging the person to share what resonates with them can surface patterns of awareness- ideas, thoughts, or beliefs that they are now processing.
Asking for what is coming up for the person can also surface patterns of resistance- practices that they are wary of or not keen to following. Lastly, being mindful of the gaps can help bring voice to patterns of acceptance. These can be valuable in gauging the feelings, perceptions, expectations, and yearnings in the given situation. They can also surface the areas where the person feels most ready and feel activated and with enough agency.
Lastly, move with the speed of the person involved
The last part of the conversation can be:
“I know there might be questions that come up after our conversation, feel free to drop me an email, if there are pressing questions that you want to ask or details you want to know more about.”
Sitting with what is unfurling helps us to see the bigger picture. This last question can offer opportunities to explore the insights and questions outside of the session and accounts for the pace of the person handling the data. Offering this is a graceful way of supporting people who need more time to process information.
Phew…. if you are still here after all of these, thank you! Thank you for taking the time, energy, attention, and space in reading my musings. How are these reframes resonating with you? Are there pieces here that you can use for your work? Feel free to drop me a note as I am curious how this work is serving you (and the ripple to those you serve)
Hiraya manawari,
Lana
Resource:
Hammond, Wayne, and Rob Zimmerman. “A strengths-based perspective.” A report for resiliency initiatives (2012): 1-18.
Lindström B, Eriksson M. Salutogenesis. Journal of Epidemiology & Community Health. 2005 Jun 1;59(6):440-2. https://doi.org/10.1093/heapro/dal016
There is so much here, I commented in my note that for me it speaks to becoming present in each moment, right attention, to seeing the human in front of us, to community, to holism... What I also love about this piece is it offers a new narrative, and shows how we can start to rewrite stories by beginning with curiosity, an enquiry, a 'what if...?'. Thanks as always Lana, sending more love to that which already surrounds you for your continued healing ❤️