The perspectives of people who had anorexia nervosa, either in the past or present:

There was strong endorsement that the results reflect the experiences of people with anorexia nervosa in general. Some of the feedback obtained is given below.

 

The ways in which it might be very difficult or impossible to decide to accept treatment:

Participants felt that the research finding that there is a perception of advantages of anorexia early on in the illness is accurate. There was also a worry about the loss of identity with treatment. Participants said that there are also reasons to keep going once you have anorexia nervosa, and that there was a difference between what the people with anorexia nervosa see as reasons to keep going, and what professionals see as ‘secondary gain' (that is, what people get out of being or remaining ill).

 

There was one question in the research interview asking whether a person “would make anorexia nervosa magically disappear if you could”; this was a subject of discussion. Participants who had anorexia nervosa felt that this can be difficult and risky and people might decide they wouldn't make it magically disappear as a result. This is, however, NOT the same as the question “if I had my life to live again, would I choose to never have developed it?” This is because people who already have anorexia nervosa might feel unwilling to let go of it, but no one who has had it would choose to develop it again if they could live their lives over.

 

For minor decisions about treatment, several people with anorexia nervosa said they depended a lot on meal plans and the parents. This was necessary to deal with the guilt of eating – “it's not me deciding to eat”. In difficult decisions about food, some could avoid the decision by just doing the default action if they were made to eat.

 

How professionals approached issues was very important to how people with anorexia nervosa felt:

The interpretations and approach that professionals use is important to whether people feel they understand about what it's like to have anorexia nervosa. Participants felt that using the analogy of wearing ‘anorexic glasses' when you have the disorder instead of personifying or externalising the anorexia leads to less hostility from people with anorexia nervosa. An example of ‘anorexic glasses' is to say “it's still you, but the anorexia nervosa is like wearing dark glasses so the world looks a bit different”. Externalising is a technique that some professionals use, to split the anorexia nervosa off from the person, like if they say “it's the anorexia talking now, I want to talk to Sue instead”. Too much externalisation can make people feel dismissed, especially if they don't agree that it's the anorexia talking and feel that they are expressing something about themselves. Externalisation, however, can be very useful for adults who see themselves as bad mothers etc. An example is to say, “it's not you who is bad, it's the anorexia nervosa that is bad”.

 

Professionals can be very important figures that patients trust. Participants talked about how having good care from professionals who understand is very important to getting better. One person talked about how she could only trust her psychologist for valid perceptions, not her parents; she trusted that her psychologist could be neutral and take an impartial view and also take her wishes into account. For this person, help for understanding the self came from the psychologist – all she knew was that she was distressed.

 

Hearing each other's perspectives:

People with anorexia nervosa found it interesting to be in a workshop with their parents and to see how their parents really felt about things, which was different from going through treatment together. Being in the same room as parents was an opportunity to see them as parents who love their children, and to understand their struggles as parents. One person with anorexia nervosa said that in the stages of fighting anorexia nervosa, it can be useful to see parents' emotions, to see how much it affects them; because being made to feel guilty can be a motivator.

 

 

Parents' perspectives:

Parents had a lot of interesting things to say in response to the research results. They had a different perspective to people with anorexia nervosa and professionals, and most parents felt very strongly that a forum to discuss their views and learn from others and about the disorder was very much needed, especially in the early stages of struggling with the disorder.

 

Problems with decision-making from the parental perspective:

Parents felt it was particularly hard for young people to make decisions and a lot of pressure then fell on parents who found it hard as they didn't know if they were doing it right. There can be many different pressures on the parents to choose for their children. In general, the parents felt that their children are not able to choose when they have anorexia nervosa; and that they are not logical though the children think that they are being logical! Some parents thought that there might be a problem with decision-making that is part and parcel of when and why certain young people might develop anorexia nervosa. For example, there was a suggestion that decision-making may be a particular issue when a person develops anorexia nervosa. Suggestions were that a person might be perhaps more prone to develop a disorder, who is a youngest child unused to making decisions, or a young person having dyspraxia or other problems, or someone who fears maturity and wants to be looked after. For parents themselves, having a child with anorexia nervosa means regression back into early childhood, with parents having to feed their child again and supervise him or her closely, usually at a time when they were expecting their adolescent or young adult children to be becoming more independent and needing less hands on care.

 

 

 

The long view:

Parents have a longitudinal perspective, knowing their child from before the disorder and seeing him or her through the disorder; whereas professionals tend to have ‘cross-sectional' one. Professionals only start seeing the person when he or she is already quite ill, and only stay until things are starting to get better, and don't see the person after they get well.

 

Personal identity:

Parents strongly agreed with the difference between ‘anorexic Jane' and ‘Jane Jane'. At the start of the journey, they said it is hard to know which is the real identity. Parents however can detect the changes in identity and personality due to anorexia nervosa very early, often before they know what to do about it or whether it's just adolescent changes. People with anorexia nervosa themselves may not know whether it's themselves or not; sometimes parents know better than the person or the professionals.

 

Bringing the long view to bear on personal identity: as disorder progresses you can start seeing the real person a bit more – and then one of the tasks for parents is to see the ‘Jane Jane' not the ‘Anorexic Jane'. One mother said her adult daughter became ‘a stranger'. Another commented that over time she learnt, at some point, to stand back and see her daughter herself rather than the anorexic daughter – both passage of time and also standing back were needed, in order to let her daughter's true identity come out.

 

The importance of developing autonomy and independence: because of these problems, parents felt that it is important to actively encourage young people with anorexia nervosa to develop independence and autonomy in decision-making. They suggested that there should be more carers' groups that support and stress to carers the importance of helping the patient develop independence again, as well as focus on early intervention aimed at that goal. People with anorexia nervosa can lose sight of their parents' identity, which can get lost in the struggle against the disorder.

 

 

 

 

 

 

 

Photograph: People telling us their perspectives

 

 

 

 

 

 

Professionals' perspectives as well as the professional role as seen by others:

Professionals had a different perspective to people with anorexia nervosa and parents. People with anorexia nervosa and parents also talked about how the professional role was very important and could be used both for harm and for good.

 

The impact of professionals

Professionals pointed out that there is a systemic aspect to decision-making, so decisions made by people with anorexia nervosa are influenced by parents and professionals who are around them.

 

Two parents fed back that professionals may be shaping views of the young person; but equally their daughter struggled to work with professionals who were using the method of externalising for her. She couldn't relate to this and found it doesn't fit, so it failed to be helpful to her.

 

A professional talked about how with time and relationship she could tell when a patient needed and wanted the professional to make the decision to have treatment for her, because she knew the patient really wanted this in spite of saying no. Another professional said that we must always address the person without denying the problem.

 

There was a comment from some parents that general practitioners have a lack of awareness and parents might have to battle with them to get their children's symptoms and condition taken seriously and referred to specialists; there is more respect from the psychiatric professionals.