My dear friend Laura posted something on her blog which caused offence. As a responsible blogger she withdrew the post although the comments remain alluding to the controversy provoked. She also further explained her position on the subject in a further post.
I happened to agree with her original sentiments. As a parent I am open to the charge of "well you would say that wouldn't you" and willing to accept that this is true. I can't view the subject from the position of a sufferer, or a clinician, or even a service commissioner because I'm not any of those things, I'm just a mum.
As a mum I am distressed at the atmosphere of blame and suspicion that surrounds parents of children with eating disorders. Yes, that is in part because I don't like being blamed or thought of as suspicious. It challenges my identity in my primary role as a mother and undermines my already pretty shaky self-confidence. That doesn't really matter though. If I feel hurt for me then I have both the right and the opportunity to pull myself together and get over myself.
The problem I have with the pervasive atmosphere, and it is still pervasive if subtle and often unstated, of suspicion and doubt, is that it has seriously affected the quality of care given to my daughter and, I believe, prolonged her illness.
I am not a perfect parent. I have made mistakes during the upbringing of both of my children which have had unfortunate consequences for them. However the biggest mistake was to be so traumatised by my daughter's illness, and so frightened that it was somehow my fault, that I was not able to fight for care for her when she needed it. I became what Janet Treasure in her book Skills Based Learning for Caring for A Loved One with an Eating Disorder calls a "Jelly Fish" too wrapped up in my own guilt and shame about the disorder and our failures in its treatment to be able to fight for what my daughter needed - active treatment for a disorder which at the time she was unable to acknowledge or fight against herself.
This is not to say that clinicians shouldn't be vigilant to the possibility of bad, even appalling parenting. Abuse should always be considered to be a possibility in any vulnerable patient and the evidence seems to show that it is more likely in those with binge-purge type eating disorders than in control groups. Treatment providers should always be open to the possibility of abuse and have clear protocols and treatment pathways should they find themselves dealing with a client who has suffered such trauma.
However they also need to be aware of the needs of primary caregivers for education, support and empathy, not just for their own sakes as human beings, but in particular because it is they who have to provide the majority of care for the sufferer and they need to make the best possible job of it.
Caring for a sick child is always difficult. It doesn't magically bring out the best in people whether that illness is schizophrenia or leukaemia There is evidence to suggest that the pressure of caring for someone with an eating disorder may be even greater than with other illnesses. As Treasure says, "in units treating eating disorders staff burnout, sickness or difficulties with recruitment and staff continuity frequently occur". This is with paid staff who have such luxuries as training, days off, supervision, sleep.... In most systems most patients are treated as outpatients. In the UK the evidence based NICE guidelines state that "Most people with AN should be managed on an outpatient basis" and "the great majority of patients with bulimia nervosa can be treated as outpatients" This means that the patient's interactions are mainly with their family. 50 minutes of therapy once a week (if you are lucky and the therapist isn't off sick) isn't going to be much good if the people surrounding the patient the rest of the time are cowed by guilt and so busy looking over their shoulders for real or imagined threats of accusations of misconduct that they are unable to adopt the compassionate, caring, calm sense of purpose that is necessary to support someone with an eating disorder.
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7 comments:
Thank you Fiona! As a parent who felt so pushed aside, questioned and not supported I appreciate your post. Those 50 minute therapy hours each week felt so inadequate - a bit like doing laundry one item of clothing at a time...and then to be questioned instead of supported in our efforts...we have a long way to go still.
Becky Henry
Parent, Author, Speaker and advocate for parents
Thank you, Fiona. I want to say, "me, too" to your and Becky's post. I must say here that I've seen significant change in attitude from the time my daughter was put into residential treatment (her second go-around, since she developed an ED in her teens and is now in her late thirties) in 2005 to last year (2010) when I went for family week. Progress is being made, in my opinion. But our situation is n=1. When I never hear again experiences you, and Becky, and I have written about, I know somehow things will have changed.
As a former sufferer of AN (restricting rather than binge-purge - if that has any relevance), I know how badly my mother felt when I was diagnosed with AN at age 12. I didn't understand her point of view in my teens - because I was so unwell and had very little 'theory of mind', but as I recovered and grew in understanding I was able to 'put myself in my mother's shoes' and really empathise with how badly she must have felt when people came up to her and asked what was wrong with me. AN was little known amongst the public in the 1970s and my mother was worried that people would think she was a bad mother who was neglecting her child in some way. They didn't know of the battles that went on at home between us, and I was so self-conscious about having a diagnosis of AN that I pleaded with my mother not to tell anyone about it.
Fortunately, no clinician suggested that my mother caused my ED, and if they had done this she would have been absolutely crushed, mentally.
There actually is a body of literature suggesting a possible (NOT a definitive) link between childhood abuse or neglect and binge-purge EDs. But that certainly doesn't mean that every child who has an ED of this presentation has been abused or neglected. The important point, as far as I see it, is that blame should never be cast upon a parent unless there is very clear evidence that the parent is still not able to properly parent the child. Furthermore, the ED should be tackled before anything else.
I will also add - that I absolutely understand why it is so upsetting for parents to be erroneously blamed for causing their child's ED.
I have to say that I have never been accused of abuse. If those involved in my daughter's care were on the look out for it (and they jolly well should have been) then they did so subtly and without overt blame. The "accusations" made, by myself as much as by anyone else, were more of the failure to be a perfect parent variety - did I have issues with my own weight, was I too close to my child, was I too distant, was I inconsistent.....? The trouble was that, to a certain extent anyway, they were all TRUE. I did, I was, I could be, I am.... The problem came when such an atmosphere (and I repeat it was MY attitude as much as anyone else's) got in the way of my acting calmly, compassionately and clearly against the eating disorder and for my daughter.
In response to your last comment... All those same things went through my own mother's mind... If/when you get to meet her I am sure that you and she would empathise deeply with one-another. She was hugely self-critical and very unnecessarily so. It is only in recent years, since I have big strides in recovery, that I have been aware of just how (unecessarily) guilty she felt.
I think and hope that more clinicians will consider the fact that in some ED patients (at least) their are problems inherent to the child (e.g. anxiety, emotion regulation and spurious response to energy deprivation) that trigger the ED - and not always look to child-parent attachment as the primary issue.
*there* are problems, Dammit my grammar on a Friday evening...
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