Warnings about fertility in eating disorder treatment

When it comes to thinking about the physical damage that may be done by an eating disorder, it isn’t uncommon to hear mention of fertility, particularly when it comes to anorexia. In fact, during the 20 years that I lived with anorexia, I was warned about the risk to my fertility many times. These warnings often irritated me, or made me feel worse about myself – even though I couldn’t necessarily put my finger on why. 

I’m a lecturer and academic, and five years into my recovery from an eating disorder, I started to do research into experiences of treatment, and one of these projects centred on how people responded to warnings about their fertility.

The study was open to anyone over 18 with experience of treatment for an eating disorder, and it ultimately recruited 24 women, with ages ranging from 19-46. During interviews with these women, I discovered that warnings about fertility were seen as a difficult and often unhelpful aspect of treatment, and that they rarely had positive associations or impacts for participants. In short, I discovered that:

• Health professionals may have good intentions in warning someone with an eating disorder 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. Rather, they were seen as ‘threats’ and ‘shock tactics’ that were intended to manipulate the participants into changing their behaviour.
• The warnings were often seen as contributing to the idea that the eating disorder was a product of choice – i.e. that if the patient really understood the risks, they could just stop the behaviours if they wanted to. This in turn tended to increase feelings of self-blame.
• The participants did not like health professionals making assumptions about their future life plans as women – largely the desire to bear a child. Although some of the participants did hope to have children in the future (and two already did), others found such assumptions damaging and problematic, as they saw their eating problems as precisely bound up with ideas about ‘womanhood’, and how society defines what it means to be a ‘proper’ ‘woman’. In this regard, the warnings did not take account of the complex meanings that might be attached to menstruation/fertility in the context of an eating disorder.
• The participants felt that such warnings were often ill-timed: i.e. being warned about fertility at age 13, or talking about pregnancy when they were terrified of getting ‘fat’.

In exploring how the participants responded, and the often negative ways in which the warnings were received, I wanted to try and reach out to health professionals to raise questions about this routine, but clearly complex, aspect of eating disorder treatment. The participants in the study were warned about their fertility by a range of health professionals, including GPs, counsellors, therapists, psychiatrists and nurses. People in these roles might like to consider the following:

• Health professionals should consider why they are warning about fertility: is it because they think that it is vital for the patient to be aware of potential risks to fertility at this moment in time, or is it as a lever to encourage behavioural change?
• Health professionals should ask the patient if they would like to know about potential fertility risks, and then be as specific as possible as to what these risks are. This may involve also being candid about the fact that the evidence is uncertain or unclear.  
• Health professionals should think about how the risks are framed, and the need to frame it in ways which are both compassionate and supportive.

• Health professionals should consider the individuality of the patient, and have knowledge of them as a person in terms of future aspirations, or the issues which might be involved in their eating disorder. The research suggests the importance of someone who knows the patient well broaching discussions around fertility. Health professionals should find out what specifically may motivate an individual to recover, and not assume that this is future fertility (or parenthood).
• Following on, health professionals should be aware of the complex meanings that may be attached to menstruation and fertility for women in the context of an ED, and how such warnings may actually be triggering, pushing someone further into their eating problem.
•  Anorexia in particular has been seen to affect testosterone levels in boys/men. Health professionals should consider the aspects above relevant to male patients, whilst also reflecting on whether they raise the issue of fertility with boys/men as frequently as they do with girls/ women.

Eating disorder treatment has come a long way since I was diagnosed in 1990, age 14. But we can still strive to make it better. Having an eating disorder can be a terrifying place to be, both mentally and physically. Let’s make sure that all aspects of treatment are compassionate: we need to respect the individuality of the patient, and enable explorations of future possibilities in ways which are both personal and meaningful. 

Contributed by Su