(Possible) explanations for when patients with #eatingdisorders “aren’t engaged”, which don’t rely on stigma and assumed character defects:
1) their prior experiences of care give no reasons to trust
2) they were ready to engage years ago but help wasn’t available
Continues👇🏽
3) healthcare systems were “unprepared to change” with the patient
4) services were “not ready” when the patient was
5) treatment options and delivery format are “not engaging”
6) their clinicians are not trained
👇🏽
7) they are engaging just by being present in a space and system that could feel unsafe. The effort of this is overlooked.
8) treatment is inconvenient and inflexible
9) spaces can be excluding or infantilising (I spoke to a service last week with butterflies on the wall)
👇🏽
10) they’ve been told people like them can’t recover
11) treatments are moderately effective at best. Why would you put huge effort into something that mightn’t pay off, when the benefits of an eating disorder are dependable?
12) their clinician/therapist is a bad match
👇🏽
13) their differences - cultural, ethnic, economic, age, gender, sexuality, disability, neurodivergence and more - are not accommodated
14) there has been no research with patients from their demographic
15) personal and community mistrust & remoteness from care
👇🏽
16) they’ve had treatment before and it hasn’t helped or has harmed
17) the service has too few resources to provide the care needed
18) time without care in a gaslighting system has not been acknowledged
👇🏽
19) feelings of being undeserving / worthless / hopeless, that derive from neglectful systems they’ve been in
20) they feel PRESSURE to get better FAST💨 because time and resource is limited
21) they are paralysed because they are only being motivated via fear
👇🏽
22) treatment is not engaging with THEM as a whole person, considering the reasons to recover which often are well outside of eating disorder symptoms
23) a shared understanding of illness, treatment & recovery hasn’t been established, so what engagement is FOR is unclear
👇🏽
24) their service is doing things to them, rather than being and creating with them
25) previous treatment hasn’t helped and they blame *themselves* as it was presented as an evidence-based option that would or should help
👇🏽
26) they find clinical spaces alienating and don’t see people like themselves represented
27) their eating disorder diagnosis has fewer services to provide care for it than others
28) they *are made to* feel like they have a second class disorder
👇🏽
29) they’ll lose access to care which will be withdrawn too soon without a smooth transition
30) they’ve been labelled “severe and enduring” and experience this as sapping hope for recovery & implying characteristics that situate reasons for a lack of recovery in *them*
👇🏽
31) they’ve encountered professionals who share views about eating disorders patients that are unashamedly stigmatising, blaming, and unethical
32) their presentation as “difficult” or “not engaged” is a misreading of their physiological state, not their character!
👇🏽
33) the bodily basis of their eating disorder is overlooked (particularly by some branches of psychology)
34) their family is wrongly blamed for their disorder which harms alliance & support structures
35) they can’t afford to get to appointments
👇🏽
36) they read about “terminal anorexia” and staged models which imply progression in one direction only
37) they have co-occurring mental and physical health problems that are being overlooked
38) their care is siloed in multiple settings and hard for them to coordinate
👇🏽
39) their clinician/therapist dislikes them
40) their service wants to withdraw care from them and patients like them
41) nobody asked them what would make it easier for them to engage
👇🏽
That’s 41. I could keep going.
Why are these factors so *rarely* considered first?
Why do we see so much readiness to attribute difficulties in treatment the “characteristics” of patients themselves, and not the environments & systems they’re situated in?
Why *would* a patient be engaged with such services? Why should they be expected to engage on terms set/imposed out by treatment providers - terms they’ve not been party to co-constructing, and haven’t been asked their views about?
Who would trade-off the “benefits” of an eating disorder for fragile, flimsy and un-evidenced care? Care which is too hard to access and increasingly too easy to have *withdrawn*.
What if patient ambivalence is ALSO about professional doubt of their competencies and the system?
What if resistance to treatment amongst patient is ALSO about services being extremely resistant to treat *them*?
What if blaming patients on grounds of character is more comfortable than directing profession enquiry inwards?
What if it’s not really patients who aren’t meeting their side of the bargain in taking responsibility for their health and care. What if this deflection is a product of services not being structured and resources adequately to take enough responsibility?
What if the uncomfortable truth is that our services cause too much harm? And by situating systemic problems *within* patients, it makes the problem of being party to causing harm “un-real” - when it being *real* is too much to bear?
(It is real, by the way)
We have to stop this stigmatising practice. It’s so disappointing that stigma is still rife within eating disorders - from care on the ground all the way to theoretical “understandings” being proposed even today. It needs to get in the bin where it belongs.
Stigma can never be the solution, because it only solves the problem of one group. It divides, harms, and pits the needs of the ones doing the blaming against the ones being blamed.
It’s time to transcend.
@rcpsychEDFac @AgnesAyton @DrChloeBeale @MQmentalhealth @ConsiderMaleEDs @AconwayM @rcpsych @thefobpodcast @beatED @TimetoChange @sensinglorna @EDResearch_UCL @kingsedresearch
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