Sometimes it seems as though the only time it is acceptable to talk about mental illness and struggling, is in the past tense - as a hurdle you have already jumped over. Humanity craves a nice neat narrative - a story with a defined beginning, middle, and end. Despite our longing to be told (or to tell) our own stories in this way, it is often not the way in which the story of our lives unfold, at least in my own experience.
Stigma is something that I have been shedding for years - layer by layer, but I will spend many years still, slowly peeling it back and loosening it from my sense of myself, like damp clothing climbed out of. I have learned to become comfortable talking about mental illness and my experience with it, but I’m careful with the language, more specifically the tense.
I know in my heart that my lived experience is one of the greatest gifts I can offer the world and the work I want to do in it. At the same time, I know that my lived experience in a raw form, requires some boundaries if it is being offered to support others. I can certainly see the point in that, as the world can look very different between states of wellness and struggle. However, I think there is a perspective in still living an experience that is always valuable, even when it's still unfolding.
It is slowly becoming more generally understood, at least with some diagnoses, that these may be lifelong aspects of a person's experience. However, it can still feel as though there is the expectation that symptoms be contained within an acceptable range for a person's experience to be considered appropriate when it comes to supporting others, or speaking to recovery. This can be important in supporting our own wellness as well as others, but the flip side is that some people will always have mental illness in their life and it won't be because they didn't "try hard enough." This raises interesting questions: should this mean an ongoing experience of mental illness isn't safe to share in certain roles (such as peer support, advocacy, etc.?) Is there an arbitrarily defined distance from struggle that makes it acceptable to share in certain spaces? Are there certain mental health diagnoses we can accept as potentially lifelong experiences and others where this is too slippery a slope to accept?
I do not bring up this conversation with a "right" or "wrong" in mind about what illnesses are okay to accept as lifelong and which things we should consider "curable" so to speak, nor to say definitively when it is permissible for lived experience to be accepted as "useful" (or that it ever has to be "useful.") Rather, this is simply a topic I find interesting to reflect on and be curious about in relation to my own experience and how I can use it to support others. For instance, I feel as though my lived experience of depression and anxiety are more generally accepted as potentially lifelong aspects of my being, with fewer parameters (although still some important ones) around my lived experience being objective enough to be considered appropriate to offer as support to others.
However, my experience of eating disorder recovery is much different. Recovery conversations for me, often feel limited and the term "recovery" itself is one I continue exploring. For many, I imagine the idea of full recovery is an important part of getting better and finding full freedom. I too want these things, but my understanding of my journey and what is helpful to it, has shifted as I've gotten older, which is why changing the language I use for myself has also been important.
When I was a teenager having experienced an eating disorder for a shorter period, it was most helpful to view recovery as all or nothing. But I didn't have a lot of insight or internal motivation to dedicate to recovery at the time. It wasn't until I was an adult that I sought help on my own terms and by that time, what supports were available to me were quickly diminishing and designed for youth.
In my twenties, having lived through periods of wellness and struggle, I have come to find a great deal of comfort in the word "journey" and "healing" over the word "recovery" (although I still use it.) I have also found a great deal of hope in a harm reduction approach at times. This term is often deeply misunderstood and carries some heavy connotations, but in itself does not preclude a "full recovery." It is simply a means of approaching how we address our healing.
Harm reduction for eating disorders is often associated with the term "chronic." Personally, I do not believe there is any use in the word "chronic" to describe an eating disorder - it rarely informs approaches to support, it simply limits them. What I do believe is that every single person, no matter what their struggle looks like or how long they have been struggling, carries the capacity within them to grow, change, and increase their quality of life. Perhaps their eating disorder thoughts and urges will disappear entirely; that would be a fantastic result. But even if that does not happen, that person is no less valuable than any other.
For me, I hope my thoughts and tendencies will fade so far into the background I no longer notice them; I have experienced this before and I don't doubt it's possible again. What I do think doesn't change, are some of the underlying factors that have led to my eating disorder and its function as a coping mechanism. I don't think I necessarily face a life of major depression, paralyzing anxiety, or certain ingrained responses to threats that no longer exist. However, genetic tendencies, brain chemistry, and certain life experiences cannot be undone, though they can be treated, managed, and moved through with medication, therapy, and so on. The brain's plasticity makes paving new neural pathways possible and that in itself, offers a great deal of hope.
It feels vulnerable to say these things as it still often feels as though harm reduction is seen as enabling and allowing. While there is a fine line in recovery between pushing and settling, harm reduction approaches can allow more room for healing. The principles of nonjudgment, working with instead of against, and honouring the inherent value of people wherever they are in their journey, can offer a different understanding of healing that supports people in moving forward in their own individual ways. (To read more about harm reduction principles, visit harmreduction.org.)
For me, these conversations around the language we use to tell our stories, how we define our healing journey, and where lived experience can be shaped into a powerful way of giving back, is closely tied to my passion for nursing and mental health advocacy.
As a nurse, I possess the knowledge and skills to support human life, to tend to the body’s intricate and various needs, and to know what can happen when things go wrong. With all of this knowledge, how can I simply not be over my struggles by now? How can I not think my way out of depression or just nourish myself properly? While those may seem like simple problems to solve in a world with many bigger ones, this line of thinking is weighted with judgment (whether it is judgment from ourselves or judgment that is external to us.) If we assume that knowing enables the capacity for doing, we miss the complexity of the causative and maintaining factors of eating disorders, depression, addiction, and many other mental illnesses. Knowledge and insight are certainly a powerful tool, but these things are only a small part of the whole picture. It is the junction where knowledge meets action with consistency that matters.
Paving new neural pathways, learning new response patterns, modifying chemical and electrical exchanges in the brain through medication, therapy, or other forms of treatment - these are complicated tasks. These things can be a helpful part of healing for many people, but they are largely focused on the individual. Addressing racism, sexism, stigma, the war on drugs, fatphobia and weight stigma, colonialism, poverty, homophobia, unstable housing, the economy, food insecurity, job insecurity, the justice system, political landscapes, healthcare systems, cultural views, capitalism... All of these and more are a critical part of the picture of healing.
You cannot adequately treat an illness without looking at the context in which it exists, and all illness, all struggle, exists in the rich and complicated context of a person as well as their life circumstances.
This is why the responsibility to heal cannot simply be thrust back on the individual as a thinking or attitude adjustment problem to be done on their own. Nor can we blame it on poor moral character. It would be lovely if we could simply think differently, turn logic into action, and arrive at change instantaneously. Reality is more complicated, people are more complicated - this is the beauty and hardship of life. We are human and healing is a journey told in ups and downs, but it's a story worth hearing in its honest form.
It is often not a straight line from illness to wellness and there are many days I really wish I could offer a neat and tidy narrative, but my story is ongoing as are many others on this road.
"Recovery" has been called many things, but what it means to each of us individually is what matters. Language is powerful. It can give life, offer breath to hope, and extend an embrace of compassion. Language can also be limiting, which is why choosing our own language to give words to our experiences can be such an empowering part of our journey. Reclaiming my own authorship from the swirl of stigma, stereotypes, and expectations that surround the concept of healing, has been a critical step in my own journey.
This authorship has been hard fought for and there certainly many moments still, where it feels lost. Learning to tell our stories in our own language is a process, but each time we find the words we choose to describe our journeys - each time we speak them into being - the more shape we give our stories and their unfolding.
It is not wrong to long for a neat and tidy narrative or a straight line from struggle to triumph. However, the richness of our lives is in the messiness, it's in the down and dirty living of it, it's in highs and lows and all-over-the-places. These are where the most painful and most precious moments live, Most of the time I find that quite beautiful and that's enough to keep going: to hold curiousity and hope as I explore healing in my life.
- S.
Comments