Reminders to my Fellow Lived-Experience Advocates
I frequently tell people that Body Banter is an extension of myself.
When I say this, I mean that telling Body Banter’s story is intricately tied to telling mine, and I strive to the best of my ability to make sure that all the work I do with Body Banter is aligned with my personal values.
I am comfortable with, and proud of the fact that my lived experience and personal interests have so deeply informed my work, but at the same time have realized the importance of asserting my boundaries in doing this work. Here, I am talking in particular about the process of learning to safely and authentically communicate lived experience as a form of mental health advocacy.
In today’s post, I’d like to share a couple of perspective-shifts that I have personally found helpful to keep in mind, and that I hope can support my fellow lived-experience advocates in telling their stories in more empowered and empowering ways too.
1. Never undermine (or let anyone else undermine) the great privilege that it is to receive your story. I spent many years of my early advocacy feeling excessively ‘grateful’ to anyone who was willing to hear my story (to the point that I felt almost indebted to them), rather than appreciating that the other person should feel similarly thankful for my willingness to be vulnerable. Reflecting on this attitude, I realize that it had so much to do with the feeling of not being deserving of others’ attention and time - I thought that they were doing me a favor for receiving my story.
An important reminder for me today is that my vulnerability needs to be earned. I have the agency to choose who I share my story with, and not everyone is privy to everything. I am allowed to stop wherever I need to, and to say no to additional questioning if I am uncomfortable. Instead of viewing the other person as doing me a favor for listening, I now remind myself that my choosing this person as someone to entrust with my story is doing them a favor.
2. You are allowed to modify your narrative as frequently as you wish.
I used to think that once I had decided on a certain way of structuring my story, I had to stick to it forever (I felt that I would appear disingenuous if I diverged from this pre-set storyline). But as I began to have new experiences that led to new realizations, and as I started to share my story in different situations, I found that this rigid approach was clearly not working.
For one thing, I recognized that the most genuine thing I could do as a mental health advocate was to embrace the reality of a constantly changing storyline. Instead of appearing disingenuous, this embracing of fluctuation actually embodied the message I was trying to send: to encourage people to adopt a more open-minded and flexible approach to understanding mental health. For another, I realized that modifying my story was a necessary step to protecting my boundaries. It might feel safe to include more details in my story when sharing in more intimate settings (e.g., in a small, in-person discussion group with my mentees), but not so safe to share the same level of detail in more public settings (e.g., on a program to be broadcasted on live television).
And a few additional boundaries I personally draw for eating disorder advocacy work in particular:
1. I stand firm with my ‘no numbers’ rule.
In my personal experience, sharing specific numbers (e.g., lowest weight, number of calories consumed, duration of exercise routine) has been triggering for me to read in others’ accounts of lived experience. This experience is supported by articles that I’ve read, suggesting that mentioning specific thoughts and behaviors can actually reinforce them (rather than warn people away from them) by exposing individuals to thoughts and behaviors that they had not previously encountered (1).
2. I do not share ‘before’ and ‘after’ photos.
I believe that doing so promotes the idea that there is a certain ‘look’ that one has to achieve in order to be considered ‘legitimately sick’, and on the other side of the coin, that there is another ‘look’ attached to being ‘legitimately recovered.’ It is my mission to bring home the message that you simply cannot tell how sick or recovered a person is purely based on what they look like.
3. I do not share footage of my current eating and exercising behaviors.
This point is linked to the one above, and is rooted in my stance that I am in no position to tell anyone what strategies they ‘should’ use in their recovery from an eating disorder. Many well-meaning media outlets ask to shoot footage of me eating and exercising in my current life to go with my interview, and while I have consented to this in the past, now choose to decline such offers.
I believe that recovery is not a stationary state or final outcome, but an ongoing commitment to caring for oneself. As such, I do not believe that there is a way to visually represent recovery. For one, every person’s definition of what feels nurturing in recovery in terms of eating and exercising can differ greatly, and for another, recovery is about so much more than just healing attitudes towards food and movement - it is about healing global attitudes toward oneself, which are often invisible (but integral) processes.
A final reminder: choosing to be a lived-experience advocate is brave, fulfilling, and important work. Share your story with pride, but also remember that you owe it to yourself to set boundaries, so that you can actually sustain this work.
And with that: go forth and conquer, my dear friend :)
References
(1) Seaber, E. (2016). Reading Disorders:: Pro-Eating Disorder Rhetoric and Anorexia Life-Writing. Literature and medicine, 34(2), 484.