This piece is called a “testament to wilfulness” which is a phrase that has certainly been deployed against me. In my experience it generally relates to being “non-compliant” or “difficult,” which is a rather problematic term. I don’t deny I can be a frustrating patient when I’m feeling threatened and reacting from a limbic system response, but a deeper exploration would reveal that my eating disorder has always been the one place I can assert a boundary and keep it. It is a defense system and it is a functional one.
While it causes harm, that part of myself serves a role that steps in when there is a threat and understanding its role provides a direction on how to heal. It feels like a separate person who can say “no.” It is not something to dissect and remove from me; it is something to understand, soothe, and build healthy responses around that make it no longer necessary.
It might seem illogical, but that part has been consistent and there for me where people (including treatment providers) are inconsistent or have caused harm. If that is your experience, the logical reality is you will rely on what has been a consistent form of protection. At times in my life where I’ve been trapped in freeze responses, the only way to say “no” was to choose my ED and access that somewhat dissociated part to speak the “no” that I couldn’t say or didn’t feel safe to assert in threatening moments.
So call me willful, but I embrace it, and maybe learn to understand the “why” behind it.
Other aspects of this piece include: a section about "hostility scales" taken from a 1960s psychiatric textbook (visible in the lower right hand corner of the collage and the phrase “politics are killing us” alongside, a sentence I wrote out of grief mixed with rage about the uselessness of political sympathy with no action to follow to change the circumstances that people living with eating disorders face due to lack of access to meaningful and supportive care.
(CW - discussion of MAID and EDs.) Waves of grief and rage overtake me every so often, especially in the wake of a dear friend’s passing shortly after EDAW 2024. The occasional sympathetic nod did nothing to prevent the circumstances where MAID for an ED became arguably the most compassionate option left. MAID is not legal for MH in Canada yet, but there are exceptions and my friend was not the first case of this in Canada. This is not to get into a moral stance because I understand and respect the decision they made to honour their life and passing, but there is rage and grief that there never was a full range of choice for them or for any of us who become “chronic cases.”
They will always be more than their ED, as am I and everyone else, whether or not we satisfy one black and white narrative of healing. We are whole and complex people and I refuse to accept the necro-politics at play when it comes EDs, those who are houseless, disabled, mentally ill, and/or using substances. I don’t want your sympathies, I want you to take action alongside me, although I hold no expectation of change coming from government or healthcare leadership: it will come from community and the people impacted most.
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