Anorexia and the Dangers of Blog Post Titles
A response to discussion of my mother’s post on parenting an anorexic daughter
Posted Mar 26, 2015
My mother Sue's recent post on parenting an anorexic daughter, entitled "You Can’t Save Your Child from Their Anorexia," has generated a lot of discussion, particularly over the past week or so. Although a few readers have said it’s been helpful or made sense to them, many others have objected to it strongly. These objections are, however, based on a fundamental misunderstanding of what the post was saying, which I’d like to take this opportunity to clear up. One reader’s comment sums up the unintended interpretations: "This article appears to deter parents from believing that they can have an active role in helping their child recover" (LBR). Nothing in the post itself comes close to saying this. Sue’s argument was that while of course as a parent one can and should be closely involved in helping one’s child recover, it’s very easy to think as a parent that the more one does the more it will help. She suggested that getting to the point where one sacrifices one’s entire life in the attempt to help may be counterproductive for both parent and child.
As Sue has already reiterated in response to some earlier comments, what the post says is absolutely not ‘"don’t try to help your child." What it says is, "don’t ruin your life trying to help them"; "don’t think the sole responsibility for their recovery lies with you."
Perhaps in this sense the title (which I chose, not Sue) was misleading: The intention behind it was to convey the idea that ‘saving’ your child—a single-handed rescue in which they themselves play no part—is an unrealistic and potentially damaging goal. Maybe it was badly chosen, though, and I should instead have used the subtitle ‘Too many parents give up everything trying to help their children’—or a comment Sue made towards the end of the post, about the dangerous idea that to "save their life you must sacrifice your own." As another reader, Laura Collins, nicely put it, the point of the post was that helping your children shouldn’t "mean being pulled down with them."
There are a few points I’d like to raise in response to the recent comments. The first is just to make completely clear, in response to readers who declare themselves "appalled" by Sue’s "insensitivity" about my illness (L. DeWolfe Wozny), or "saddened" by such an "irresponsible" post (LBR), that both she and my father did a huge amount to try to help me recover, from the early days of my teenage diagnosis to the bleak later years of my inch-by-inch decline further into sickness as a graduate student. It should be clear from what Sue said about how "as soon as we realised the seriousness of her illness her father and I tried to help all we could," and the examples she subsequently offered, that the last thing either of them did was "back away from trying to help their child" (Diane). But in case it isn’t, I’ll give some more examples of what they did.
They read a good deal of the current clinical research, they initiated my first course of psychiatric treatment, they came with me to family sessions with the psychiatrist, they followed his advice as regards how to encourage me to eat, and all those things helped me make some progress. Later, around when I turned 21 and was spending a year in Germany and they became aware that my condition had deteriorated again, they insisted that I put together a realistic plan for weight gain or else come home to England for inpatient treatment; that was a stimulus to me to eat significantly more, and one of them flew over from England every fortnight to visit and see how I was getting on in the critical period where it could have gone either way. Later still, when I was living back at Sue’s home during the vacations, she and my stepfather set times by which I had to get up (around lunchtime), and at some point we made an agreement that I’d eat with them for the whole day every Sunday, and they kept encouraging it and finding ways to make it more bearable for me, until for me the whole week became one long misery of dreading Sunday and I gradually stopped managing to eat anything much then anyway—less than I would have left to my own devices. There were many birthdays when we tried to do something nice involving a communal meal, and repeatedly I ended up eating barely anything.
In all these cases readers might say "well, they should have tried harder," but how exactly, and to what end? Even with a child as young as 16, you can’t actually prevent them leaving the table by force, and if you get close to trying it, or trying to force-feed them, you’ve probably long ago strayed into the territory of the counterproductive.
In all these cases, I believe they got it more or less right: They encouraged, pushed, persuaded, facilitated, as long as there seemed any point, and then they accepted that it was doing no good, and stopped, and tried something else later. I got better when my life had got awful enough that I accepted that there was nothing left to try but recovery; my parents’ hurt and their arguments and imagining their delight if I succeeded were motivating factors, but by no means the only ones. One powerful factor was in fact a moment when my mother instinctively stepped back and realised there was something she really couldn’t cope with: the idea of my anorexia coming with her when she moved house. Interestingly, although the moment of her saying that to me is something I’ve discussed on the blog and elsewhere, it received nothing like the negative responses this recent post has elicited, though the import is the same: It’s okay, as a parent, to set limits for your own sake. And it probably gave me a more effective jolt into thinking seriously about recovery than years more of living with her trying to cajole me into eating would have done. We’ll never know, of course. But ultimately, if lasting recovery does happen it happens because the sufferer does it.
I’ll come back to the issue of individual volition towards the end of the post, but my aim here is simply to drive home the point that my parents loved me, they suffered, and in every situation they made the best decision they could about what was most likely to help me get better. The only thing they didn’t do was give up their entire lives in that endeavour. And had they done so, and I had got better, I don’t know how I would have lived with the knowledge that their lives were wrecked for the sake of mine. What kind of burden is that to expect your child to bear? I’ve often thought about how difficult life would be if my father had died before I recovered, before I was able to share a few years of happiness with him freed of all the dark obstacles that anorexia creates. But now, thinking for the first time how it would be if either or both of them had got deep into debt, lost their jobs, reduced their lives to nothing but being my carers, it seems to me quite clear that that would have been close to unbearable for me, whether I had stayed ill or got better.
My second point concerns the distinction between personal experience and reliable experimental evidence. Sue’s post focused explicitly on her own experience of being a mother to a daughter with anorexia, and from that personal experience she attempted to extrapolate a conclusion which she thought might be helpful to others in similar situations. Some would argue that ever attempting to draw general conclusions from individual experiences is a mistaken enterprise, but in areas like mental health in particular, it seems important that researchers not neglect the personal, the emotional, the things that can be hard to pin down in clinical research. This is one of the motivations behind my current research project investigating the relationship between eating disorders and fiction-reading, using a combination of qualitative and quantitative methods. The scientific research and the individual testimony should, in my opinion, be treated as complementary though not equivalent ways of moving towards the same goal: in this case, a better understanding of eating disorders and how to prevent and treat them.
One of the cornerstones of the experimental method is the hypothesis: the preliminary explanation of a given phenomenon, which is subjected to empirical testing to provisionally confirm or refute it. In scientific practice, hypotheses will normally be constructed out of the available evidence from past experiments. But creating hypotheses from our own experience is something we do all the time, more or less deliberately, as part of making decisions about our future actions: I did x in context y, and it worked pretty well, so for now my working assumption is that x will work okay in contexts y1, y2, y3, etc. Beyond providing guidance for individual action, hypotheses from personal experience may sometimes also be valuable in providing ideas for starting points for structured research. Although most scientific hypotheses come from previous research, others can come from wild speculation, sudden insights or ordinary personal experience. It doesn’t matter where they come from as long as well designed experiments can test whether they’re valid or not.
Mental health is a challenging enough field that inputs of both kinds should be valued, and it’s crucial that we don’t lose sight of the experiential side of things when we design research into causes, symptoms, and treatments. The key point, though, is that although drawing conclusions from personal experience is both unavoidable and potentially valuable, it isn’t the same as drawing conclusions from carefully designed experiments, and in both cases we must be clear what we’re doing and to what end. It’s to be expected that from an evolutionary perspective we would have a bias towards evidence based on our own experience, such that counterintuitive scientific results tend to change our intuitions only slowly if at all (think of the well documented phenomenon of change blindness), while weak or provisional results that confirm intuitions may be subjected to less critical appraisal than they ought to be.
There are few topics more guaranteed to induce strong emotion than parenting and children’s illness, and where heightened emotions are involved it’s all the more important to distinguish clearly between personal and scientific "findings." Several readers have made comments which refer explicitly or implicitly to scientific research but don’t give references to back up the statements made. Maybe there is good supporting evidence for the claims being made; but if so, it’d be good to see it. For example, a point made by Chris: ‘The best-available evidence from research studies is showing that children and teenagers have the highest probability of recovering from anorexia nervosa when their parents sit with them at meals and help them increase their intake of food, in a consistent and persistent fashion. Parental self-confidence in accomplishing this task, and early weight gain during treatment, is predictive of a good outcome.’
Perhaps, Chris, you were referring to the 2010 Lock et al. study you linked to in a previous comment? If so, yes: This study seems to have adopted a solid methodology and offers a fairly strong result in favour of family-based treatment (FBT). But this is a single study. A recent review of the existing research on prevention and treatment of eating disorders in young people (Bailey et al. 2014) found weak support for FBT, with caveats including the following: "FBT also appears to be more effective for younger adolescents and those with a shorter duration of illness, however the majority of trials only report mean participant ages in the 12–18 range. It should be noted that these findings come only from a small number of trials with small sample sizes, where risk of bias is notable." A meta-analysis specifically of FBT (Couturier et al. 2012) found support for FBT as compared with other interventions at follow-up (6-12 months), though not at the end of treatment—but only three studies met the criteria for inclusion. This isn’t at all to contest the value of the 2010 study, just to suggest that it’s important to remember that scientific understanding comes from the gradual accrual of well conducted studies that confirm or disconfirm previous findings and so converge on what we come to think of as established fact. One experiment is never enough. Let’s keep studies like this coming, but not extrapolate over-confidently from one.
Overstating the available evidence is a risky business, especially when it goes this far: "As a mother who gave up everything three years ago and has a thriving daughter at 20, I can tell you that any sort of 'they must want to be helped' approach is not supported by the evidence. In fact, aggressive treatment immediately—in the form of 3,500 cal/day in my daughter's case—is shown to be the best indicator of length of illness. Hit it early, hit it hard" (JD Ouellette). This claim seems highly implausible. Anorexia is a mental illness as well as a physical one, and aggressive refeeding in the absence of motivation on the sufferer’s part to acquiesce in this process or to maintain the positive changes achieved afterwards is likely to be a problematic strategy, as is clear from the equivocal (and very limited) evidence for the benefits of inpatient and residential treatment of eating disorders (see Pike 1998 and this Science of EDs post respectively). In the case of this reader’s daughter, the strategy may seem to have paid off. But it’s clear that here personal experience ("As a mother who gave up everything...") is colouring the assessment of "the evidence". And the more extreme the course of action recommended, the greater the burden of evidence. So let’s see it for this, please.
Here a comparison between the treatment advocated by this reader and that described in the scientific literature may be instructive. Let’s look more closely at what is actually said about FBT as employed in Lock et al. 2010:
"FBT is a 3 phase treatment. In the first phase therapy is characterized by attempts to absolve the parents from the responsibility of causing the disorder, and by complimenting them on the positive aspects of their parenting. Families are encouraged to work out for themselves how best to help restore the weight of their child with AN. In Phase 2, parents are helped to transition eating and weight control back to the adolescent in an age appropriate manner. The third phase focuses on establishing of a healthy adolescent relationship with the parents. Twenty-four one hour sessions were provided over the one year period."
The two descriptions could hardly be more different. All the aggression, all the hard-hitting removal of agency from the sufferer through metaphors of violent conflict, are here replaced by a constructive approach to making parents feel better about their role as parents, by an emphasis on "helping" and "working out" in the first phase, and a transition of control back to the sufferer in the second, with the child-parent relationship taking centre stage in the third phase. Given even the very basics of what we know about how families operate, this kind of collaborative effort seems far more likely to be successful than the all-guns-blazing "you will eat now" approach. Weight gain is absolutely essential to recovery from anorexia, but it is not at all clear that the warfare approach to making it happen is likely to work best.
It’s also perfectly clear, from the description given by Lock and colleagues, why this form of treatment appeals specifically to parents. Being complimented on one’s parenting must always be nice, and there could hardly be anything more attractive to a parent of someone suffering from an eating disorder than being helped to find ways not just of improving one’s child’s physical health but rebuilding one’s own relationship with them at the same time. And this is where the parents’ needs come back into the picture.
As I said before, the clinical trials are invaluable, but they sometimes occlude the individuals, the suffering, the uncertainty. And this is especially the case when those individuals are not the sufferers themselves, but the people around them who care, fail to understand, get angry, get frightened. The depth of these emotional investments becomes painfully clear in some of the other comments on Sue’s post. For instance, Bet writes: "I dedicated months of my life to making sure my daughter ate, drank, took her vitamins & meds, got out of bed & to her appointments. Giving up my life for a while preserved hers. [...] Every moment sacrificed was worth it."
Bet, thank you for sharing this. It’s possible that dedicating a period your life to this did indeed help your daughter recover. It’s also possible, however, that she would have found her own way out of her illness. It’s possible that the current "skirmishes and vigilance" you then go on to mention would have been averted, or have taken different forms. It’s possible that you would be in a different place yourself, and feel differently about all sorts of things, if things hadn’t been configured as warfare, with you as one of the soldiers, from the outset. Who knows. You will never know, just as Sue will never know how things would have turned out for me had she acted differently. Just as those who lose a child to anorexia will, heartbreakingly, never know whether that child would have lived had they acted otherwise. Real life isn’t an experiment; there is no control condition. It may be deeply comforting now to believe that all those sacrifices had a point, were necessary, but that doesn’t necessarily make it so.
My third point comes back to the question of choice in recovery from anorexia. Eating disorders are particularly difficult to understand and treat because they’re poised so delicately between physical and mental illness. This makes questions of agency and entrapment highly complex, perhaps more so than in any other physical or mental disorder. Repeated efforts at recovery often fail until some crucial spark of steely determination somehow emerges and makes recovery possible and lasting. This isn’t to say that the sufferer made a choice to become ill, which is something that several readers have read into what Sue wrote, and in some cases accompanied by an inappropriately inflammatory comparison with cancer: for example, "I wonder if PT would publish a piece saying, 'You can't save your child from their cancer, so don't bother trying'" (JD Ouellette). The point is just that he or she can choose to try to get better—and of course, when he or she does, what’s needed to start recovery is blindingly simple, if not easy: simply eating more, day after day. This is why Sue said what she did: "It’s so terribly hard to understand why anyone would do this to themselves." This is why anorexia is one of the most incomprehensible of conditions to people who have never suffered from it.
There is no other mental illness for which the initial treatment strategy is so simple as for anorexia, and this simplicity means that the barrier to recovery lies more in making the initial decision to act differently than is the case in other mental illnesses, like depression, for example, or anxiety disorder. The unusually significant physiological component of anorexia compared to other "mental illnesses" also means there’s a powerfully entrapping chicken-and-egg situation to be escaped from if recovery is to happen: The rigid patterns of thought and behaviour brought about by starvation has to become more flexible if eating more is to become possible, but eating more is the only way they can become more flexible. There are all kinds of things that may break into this vicious circle, and parental input is one of those things, but only one thing. Parents who believe the responsibility for breaking the cycle lies with them alone may, as I’ve suggested above, do more harm than good, to themselves and their child.
I’ve explored some of these tricky questions in other posts, but dismissing, as L. DeWolfe Wozny does, the whole idea that there’s an element of agency here by patronisingly bracketing Sue’s suggestion as an example of "New Age” philosophies" that conveniently abdicate parental responsibility is not particularly helpful. It’s important to understand the extent to which anorexia is an illness with genetic and neural components, but it’s crucial also to recognise that none of that diminishes the role of individual decision-making in recovery, nor does that role diminish the reality of the illness from which it may spring. What could be a clearer example than anorexia of the inseparability of body and mind?
Finally, I would like to say to the mental health professional LBR who declares him/herself "deeply saddened" and "disappointed" by this post, arguing that "Parents can and should give up whatever they need to give up to help save their child's life"—this is irresponsible in the extreme. You’re saying quite clearly here: Parents have no mental health needs of their own that need protecting. Everything that can be given up, up to and including sanity, should be if there’s any chance of it helping one’s child.
How is this responsible psychiatric advice? How is a parent suffering a breakdown from exhaustion going to help his or her child? What is the child meant to do once the parent has given up everything to help them?
Reading this post so carelessly as to conclude from it, "This article appears to deter parents from believing that they can have an active role in helping their child recover," and then stating that parents have zero rights or responsibilities to themselves because their child is ill is breathtaking, coming from a mental health professional.
Perhaps the best place to end is with Laura Collins’s comment that it’s crucial that "at times we accept what we cannot do." That doesn’t mean giving the anorexia what it wants: the time and space to grow stronger in the dark and in secret. It doesn’t mean disowning your child or stopping being there if he or she turns to you or stopping trying things that might help him or her. It means remembering you are a human being with needs too, just like your child is, and that that’s all right. It means acknowledging, however terrifying it is, that you brought this person into the world and you now can’t control everything that happens to him or her. Acceptance on both sides is the only thing that can save us all.
In any case, I would like to finish by thanking all those who have posted comments on Sue’s post: Those whose comments I’ve referred to here and those I haven’t, those whom I agree with and those I don’t. As with most things in the sphere of mental health, open discussion is better than silence.