By Judy Krasna, F.E.A.S.T. Executive Director
I want to put something out there as food for thought and as a springboard for discussion. I have a bunch of questions and no answers.
I don’t have an exact figure, but a lot of providers who treat eating disorders have a personal history with them. A lot. In a way it makes sense; a provider’s own lived experience with eating disorders can add dimension to their work and may allow them to better relate to the people they are treating since they have an inside view of the illness. They themselves found a path to recovery, and that may make them well suited to help others find their path. They want to help others, just as others helped them.
Best case scenario, these providers are fully recovered. Their eating disorder is ancient history.
The thing is, best case scenario isn’t always the reality. I have heard from multiple providers that they continued treating people with eating disorders after they had relapsed and their illness was once again acute, even though they knew that they shouldn’t. They convinced themselves that they were okay to provide care to others despite their own mental state. And maybe they were okay. But maybe they were like people who get into a car after drinking all night at a bar and are under the delusion that they are not impaired or compromised. There are times when even the best driver in the world shouldn’t get behind the wheel.
If you look at this objectively, maybe it doesn’t matter. I’m sure there are oncologists who are cancer survivors, and it probably makes them better providers. Even if they relapse and their cancer comes back, it doesn’t impact the quality of treatment that they provide. But somehow, in my mind, this may be different.
What concerns me even more is that in my experience, people with lived experience of an eating disorder fall primarily into 2 camps. There are those whose parents were an integral part of their recovery and who received family support and there are those who feel that their parents caused or contributed to their eating disorder and were not at all supportive in helping them recover. My heart goes out to that second group; I want to reach out and give every one of them a huge hug.
Maybe eating disorder providers have a superpower that allows them some sort of disconnect from their own lived experience while treating patients. But what if they don’t? What if a provider has negative feelings toward their own parents and family due to their own history and experience and they can’t close that off from the treatment they provide? What if they carry that parent bias into their treatment space and foist it onto the person they are treating? What if their own history precludes them from involving parents in treatment?
I know, there are a lot of “what ifs”, and I don’t claim to have insight. It’s something that I worry about, and I think it’s something we should speak openly about with the provider community. I know that more than a few providers do not want to admit that they have lived experience of an eating disorder. My question is, why is that? Is it a stigma thing? Are they worried that other providers may look down on them? Do they think that admitting that they once had an eating disorder will put them under a magnifying glass?
I know many, many excellent providers who have battled an eating disorder in their past. They are inclusive of families in treatment, and they are wonderful at treating patients. Their lived experience has a positive impact on their work. And with that, I am left with nagging questions and concerns about whether this is always the case, and what happens to patients and families when it isn’t.
These are my thoughts, I would love to hear yours.
In my experience individuals with lived experience (particularly the younger ones) are no more, or less, likely to hold parent blaming views than those without it. I’m old enough to remember when the first line of Philip Larkin’s infamous poem was the first thing taught in Social Work training and “refrigerator mothers” were blamed for everything from brittle diabetes to autism. Including, rather than excluding, families is now much more fashionable and mainly this is for the absolute good BUT the inclusion of experts by experience (often on minimum wage) as the only treatment providers while demand soars and the medical profession is in crisis, the emphasis on community care while beds are being closed and the concentration on family support when no one is supporting the family is problematic. Again, just thinking aloud here.
I Wonder the same. I guess my real concern would be if they are in a relapse, being this a mental illness, they would not think straight and I like your analogy with the drunk driver who thinks he/she isn’t impared. If they are recovered, I guess they would gave biases as any other human being, and it’s a matter of being well informed as parents to make the right questions before agreeing to treatment. And yes, I think there’s still a lot if stigma around mental illnesses and some people think/know they will be judge or looked down by others.
What will be interesting is to have providers with lived experienced as parents, although the same questions would apply.
Yes, the inclusion of people with lived experience as carers is also interesting – and being done by providers in Australia and providers like EQUIP, but again I would still hope that this is being done as part of a Multi-Disciplinary Team
Thanks for asking the question, I’ve often wondered the same thing. The answer is probably that it’s very bad for some people with lived ED experience to work in the field, and very good for others. Part of me wonders if it’s part of their personal recovery for some, like being an AA sponsor. I’d assume that the ones who found it triggering wouldn’t stay in the field, so hopefully the ones who do stay are fully recovered and offer a great service by sharing their firsthand expertise. I agree that there could be a danger of ‘this is how I recovered’ so not being open to other treatments. I’d like to know the stats, it seems a unique set. I’m not sure I know of another group of ‘survivors’ that choose a line of work that keeps their illness prominently in their lives (albeit in a different capacity). Interesting.
I was trained under carolyn costin and she is one of the first Ed providers to publicly “come out” as recovered and in the field. Over 90% of her trained and certified ED recovery coaches have lived experience. And she has guidelines before accepting them in the program AND they are trained with the lens that they themselves battled sn ED and trained HOW to use their experience and how not to use it. In that model with those guidelines it makes sense. The provider needs to check their own biases at the door. And that should be about everything.
I am a parent of a young person with an ED, I have lived with my Ed for 30+ years, never being able to fully recover but managing it. I have struggled to try to support my daughter with the help of CAMHS, but it has been difficult for me. I have been triggered on many occasions and my mental health has suffered because of it. Unfortunatly my daughter is now 18, still has an ED and I am the person she looks to for support. I am able to give her all the benficial, helpful tools and strategies I learnt over the years but it come sata a cost to my mental health when she has episodes of deep distress.
I think it’s okay and probably often good for providers to have lived experience if: 1) they truly embrace the idea that families should be involved in treatment to the greatest extent possible, 2) they are fully weight restored themselves and accept without question that extra weight is often key to recovery for people with eating disorders, and 3) they carry no shame related to having had an eating disorder.
With my daughter’s initial or first time in treatment, I liked the idea that both her nutritionist and ED therapist had recovered from EDs themselves. However, I wonder now if their experience may have impacted their standards of care. What I know now is that my D should have been on a meal plan much longer than two months after she was released from IOP and we should have had safeguards in place to make relapse less likely after IOP. The nutritionist and ED therapist she has now are seasoned providers and they reign in and release as needed in my D’s recovery treatment.
I’m glad this question has been posed. The lack of size diversity among ED dietitians/nutritionist, skewed towards the thin end of the spectrum, especially among those who have lived experience and are apparently recovered, has always concerned me greatly. How can we convince our clients that healthy bodies can come in all sizes when that is not reflected in the treatment team, especially in those advising about nutrition I am concerned that many ED clinicians who claim to be recovered but are coincidentally still a size 2 (when the average weight is closer to size 12), are not truly recovered.
The carers and nurses at the service where my 18 year old daughter is currently resident pretty much all give a history of having suffered from an ED in the past. At first I thought this was a bit strange but since then I have realised that it gives them a heightened sensitivity and understanding of difficult ED behaviours. And as weight restored survivors, they also have an inner strength and a zero tolerance policy.
Occasionally it is not helpful – for example when one of them eats a different meal from the residents, my daughter used to find that ‘triggering’. Maybe it’s a sign that my daughter is also getting stronger that she no longer finds it triggering.