By Imogen Robinson
Women receiving treatment for eating disorders need more nuanced and sensitive information about their reproductive health, research has revealed.
The findings also showed that more thought needs to be given to how and why fertility information is delivered.
The results come as part of an overall set of findings that suggest people with eating disorders (EDs) should have more input into the treatment they receive, and the way information is communicated to them.
Leader of the study, Dr. Su Holmes, from the UEA’s School of Art, Media and American Studies, argued that current medical intervention doesn’t recognise the complexities of the individual causes of ED, and that treatment options aren’t delivered on a case-by-case basis.
She said: “Invariably, treatment regimes look at EDs as a ‘problem’ to be solved, rather than considering the myriad of reasons the individual may be in eating distress or body distress.”
Dr. Holmes added that this is most evident when it comes to medical professionals discussing reproductive health with women in treatment.
Not only is the empirical evidence that EDs pose a risk to fertility contradictory, she said, but if it is delivered as a ‘warning’, medical advice about any possible link between EDs and infertility presents further problems.
The study looked at 24 female participants who were mainly recruited via eating disorder charity Beat.
All the participants had received a diagnosis of an ED, including anorexia nervosa, bulimia nervosa, and eating disorder not otherwise specified, and some of the women had had children.
All but one of the participants had been told within treatment that an ED may compromise fertility.
While most of the women said the information was delivered more than once, they described it has being delivered in a “vague” or “unclear” way, with one participant stating “It was sort of like, you might or you might not [have fertility problems] – it is just left hanging over you”.
The women in the study also reported feeling that fertility information was “seen as a manipulative strategy intended to change the patient’s behaviour.”
Another study participant said this information made her feel like medical professionals were just trying to scare her, adding that it wasn’t a way to get her to be better.
Participants in the study referred to the information given by healthcare professionals about EDs and their relation to fertility as “blackmail”, “shock tactics”, “scaremongering” or “ammunition”.
Dr. Holmes said: “These terms suggest a conception of treatment as a site of conflict or battle that unfolds within unequal relations of power: it is the health professionals who are seen as being in a position to ‘scare’, ‘threaten’ or ‘blackmail’ ED patients over the perceived state of their future reproductive choices.
“Health professionals may have good intentions in warning someone with an ED about their fertility. But from the point of view of the participants, they were generally not seen as a helpful, caring or compassionate aspect of treatment.”
One woman said: “I just remember thinking that this is the least of my worries. My worry is the 30 grams of cashew nuts you are going to make me eat this afternoon.
“You can’t even make sense of a carrot stick at your lowest – never mind whether you want children. It wasn’t really helpful, nor an incentive to get better.”
Participants said they found information about the possible effects of their ED on their reproductive health perpetuated the sense that the ED behaviours were somehow a product of choice, increasing their feelings of self-blame and self-loathing.
The research findings also draw attention to the ways in which the cultural aspects of EDs, such as the fact that women are over-represented as ED patients, are poorly understood in treatment.
For instance, according to Dr. Holmes, fertility is bound up with particular ideas about ‘normal’ womanhood, so some ED patients said warnings about their reproductive health and the related assumptions about gender actually made their illness worse.
One patient who was unsure about wanting children in the future said: “It was another thing feeding into the idea that something was wrong with me.
“Because these expectations [of motherhood] were everywhere – in treatment, and mentioned by friends and family – I didn’t talk about these feelings, even though they are probably one of the main reasons I got ill in the first place.”
Most of the participants in the study thought that it was important to have access to information about possible risks to reproductive health, but thought the delivery of this information could be improved.
Dr. Holmes believed medical professionals should enable patients to make informed choices about how much they want to know about EDs and fertility, and that such information should not be delivered as a warning – with the attendant power relations that poses.
She said: “Medical professionals need to be as specific as possible about what the risk to fertility actually is, as well as being candid about the fact that the evidence itself is often uncertain and unclear.
“The bottom line is, people with EDs are all individuals, with different reasons for getting ill and different reasons for getting better or not.
“By de-personalising a person with ED as ‘the patient’, the primacy is placed on the ED, rather than the person behind or within the experience of eating distress.”
The research is published in the journal of Sociology of Health and Illness.