by Melanie Stevenson, F.E.A.S.T. Parent Volunteer
The shock we first feel when we hear the diagnosis ‘eating disorder’ throws most parents into a state of terror.
The first stage tends to be asking ourselves lots of questions: How did this happen? Why did this happen? Why my child? What did I do wrong?
As if this state were not bad enough to deal with, often before we have really taken on board what treating this illness entails, we may also be faced with not just unhelpful, but downright destructive comments from others, who may be well-meaning. I don’t think many parents or carers escape this extra layer of torture, so it helps to be aware from the start that this may happen.
How do we deal with unhelpful remarks? Firstly, I think we have to take the time to get our heads round the illness – and FEAST’s FIRST30Days service can help hugely on this level.
Because when we truly understand that this was not our child’s fault and not our fault, and when we become more confident in our knowledge, we can stay calm in the face of what is usually ignorance.
One of the most hurtful comments that was made in the early days of my daughter’s illness came from a friend. She had an Italian friend who was a paediatrician and said quite nonchalantly, “In Italy they say that anorexia nervosa represents a total rejection of the mother.” This comment at the time shook me to my core. It clearly did not make sense, but I did not have the knowledge to counter it. My husband had died a few years earlier and I was bringing up my daughter on my own; and in spite of the illness, we had a close and loving relationship. But it did put me in a tailspin–was this what it was about? What had I done to make her reject me? The lack of knowledge at the time was what caused the self-doubt. I have never even bothered to speak with my friend about this remark because this occasion is in the distant past. I love this friend, but there is still a slight resentment that she could even say this; she could have said nothing and it would have been kinder.
Even worse, what happens when we receive inappropriate comments from the so-called professionals, the people who we are trusting to look after our children and help them return to health? Sadly, there is still a lot of ignorance around among clinicians in the eating disorders world. Outdated views still hold. Of course there are some compassionate and brilliant clinicians out there and I do not wish to criticise the people who are doing great work. But a psychiatrist in the hospital where my daughter went for inpatient treatment told me, “This is all about the death of her father.” Again, I felt demoralised and also doubtful – given that my own father died when I was very young, I felt I was better placed than most to support my daughter through the death of her father and that I had actually done very well up to that point. Later when I found out through FEAST that there is a strong genetic element in the development of an eating disorder and also about the impact of weight loss in susceptible individuals, I felt reassured; but at the time, it was a hugely deflating comment which was very unhelpful.
There are other horror stories in terms of what the ‘professionals’ have said to parents that I have come across. One psychologist was waiting for the patient to drop to ‘rock bottom’ in the hope that the patient would start eating again. At a BMI of 11, that patient was more likely to die than eat. And it is hugely scary that a clinician can be so ignorant in a hospital setting because these comments are not only unhelpful, they are actively harmful. Another mother was told that her daughter was unlikely to recover if she didn’t recover by the age of 18; and in spite of what I say to try and reassure her that her daughter will recover, that comment shook her to the core and she has doubts.. Another FEAST parent was told to back off, that it was all psychological, and the clinician was going to build a relationship with the patient to find out what the ‘real cause’ was. The list is extensive, unfortunately.
I am not writing this post to advise on how you respond to unhelpful and harmful comments, but to say that, with knowledge and time, it becomes easier to find the strength to stand firm and confident in what we are doing and let those comments wash over us.
And to let those parents know who are just starting out on this journey that while negative and ignorant comments are to be expected, they do not need to knock us off course from the recovery journey.