Jan Cullis (Bronte's mum) on anorexia nervosa
Sunday, October 31, 2004
A live interview with Jan Cullis (Bronte's mum) on anorexia nervosa. Jan, thanks for joining us once again in our live online 60 Minutes interview.
Jan Cullis: I'm more than happy to be here, thank you, and I hope I can help.
Interviewer: We will go directly to questions from the many guests who have joined us tonight to talk to you.
Trixx asks: What are the warning signs and symptoms of anorexia?
Jan Cullis: Usually the first sign is a mood change. Particularly in adolescence, when young people start withdrawing from friends and isolating themselves from those that care for them. Aside from a warning sign, what we would call a predisposing characteristic is extreme sensitivity, fear of change or novelty-seeking behaviour. Starting to restrict certain types of foods.
Grug™ asks: Is anorexia nervosa more common than it used to be or is it just being identified more?
Jan Cullis: Eating disorders are primarily secret disorders, so it's hard to say that the numbers are increasing, though we are seeing more and more and it's an epidemic, from the Bronte Foundation's point of view.
ellen asks: This disease is such a tragedy, how far back in history does it go or is it a modern disease?
Jan Cullis: Anorexia goes back in history to the 1600s and in the last 100 years the outcomes from treatment have not changed. We have made no progress in the last 100 years.
joye asks: Is it possible that anorexia is some way genetic, seeing that identical twins have the same disease?
Jan Cullis: Without doubt anorexic nervosa is a genetically mediated illness. There have been twin studies confirming this and in fact twins are most often used in inheritability studies. Researchers in America think the genetic mediation is mostly related to anxiety.
sparkle asks: Is the severity of anorexia determined by the degree of weight loss?
Jan Cullis: No, the severity or degree of weight loss does not determine how acute the illness is. Temperament, self esteem and the appropriateness of treatment all impact on how severe anorexia becomes.
mattthew123 asks: What does someone with anorexia see when they look at themselves?
Jan Cullis: They most often see an enormously obese person who in no way resembles what we see of them. They often draw themselves with elephant legs and elephant toes and that is truthfully what they see.
mish2004 asks: Should the twins be split to treat their diseases individually instead of together, as they seem to be encouraging each other to lose weight?
Jan Cullis: This is a dilemma we are facing. The Bronte Foundation is involved with treating the twins and we have made the decision to start out together and we will work individually with Rachel and Clare when they are more able to use the therapy without being so co-dependent. To split them at the moment would be detrimental, although in time it would be highly desirable to help them recover as independent individuals.
david asks: Jan, why would you help anyone who doesn't want it, doesn't need it, doesn't respect your advice and compassion. Their mind is made up to go ahead and die. What will be done will be done, so why?
Jan Cullis: Firstly, can I say that at the Bronte Foundation we recognise that the negative voice speaks on behalf of the self. What you saw interviewed tonight with Rachel and Clare was their negative voice, that part of them that does want to die. But there is also another part; the true authentic self that very much wants to live, appreciates the fact that we can see it there and is thankful for our non-judgmental approach and wants to work with us.
Jill asks: How do you manage your own anger and frustration with the person suffering?
Jan Cullis: I don't have any anger or frustration with the person who is suffering at all. I see straight past the illness, the behaviours, to the true authentic self and this part often looks like a frightened child curled up in the corner. So I never feel anything but compassion and a desire to help this person change their behaviours and their thinking and start to find out who they really are without the eating disorder.
A2 asks: Do you think that hospitalisation for anorexia should be permissible without consent from the sufferer?
Jan Cullis: That's a tough question, because when sufferers are really malnourished and suffering from starvation, it is difficult for them to think rationally, in fact almost impossible, and steps need to be taken to protect them until they are in a position to make rational decisions. What I would argue is that hospital treatment should be dignified, humane and always totally uphold the right of the sufferer as an equal within the hospital, not as a lesser human being, as so often is the case.
madaca asks: Does the legal system give anorexia any special consideration at all?
Jan Cullis: In my experience the legal system does not see mental illness as a reason for an individual behaviour. I have attended court before with sufferers who have been charged and have experienced a judgment that they had chosen this behaviour and had to fight to have the behaviour seen as part of the mental illness.
anothermadwoman asks: I would like to ask why anorexia would be classed as a psychiatric illness?
Jan Cullis: It's a psychiatric illness because sufferers' thoughts are anywhere from phobic to delusional. No one in their right mind would self-impose the torture and torment that a sufferer of anorexia goes through 24 hours a day, seven days a week
Scorpioguy asks: I was shocked that even when their parents discovered that when they were 14, they couldn't do much. So the earlier that you discover doesn't really help, does it?
Jan Cullis: It makes a very big difference. Early intervention is very important. The earlier a child is diagnosed, the sooner you can get treatment. However, the treatment has to be appropriate. Clare and Rachel's treatments were not appropriate, so it made the illness worse. We at the Bronte Foundation see children with severe anorexia and turn their illness around, getting them back into school and life usually within 12 months.
sister asks: Jan, what do you think of the Swedish treatment that was featured on the Sunday program this morning?
Jan Cullis: I've read the research on the Swedish treatment and I think the research is questionable. Yet their program is very similar to what we do at the Bronte Foundation. We need to have an inpatient unit. The research on the Swedish program would never get ethics approval, which would make it difficult to run such a trial. Our results would compare very very favourably with the Swedish program anyway. We have fantastic results at the Bronte Foundation and we have also treated more than 200 patients and have very low relapse rates and great results at getting long term, short term and all-age sufferers back into life. If you want any information on our program, including our upcoming conference, our website is www.thebrontefoundation.com.au
Aunty_Ami asks: Can you tell us more about the Bronte Foundation, how it works, how it's funded, etc?
Jan Cullis: Firstly, we receive no funding. We rely upon donations. We charge a very small fee for treatment, although the foundation waives fees for those that cannot afford them. It does this through donated funds. If we have no donated funds, we cannot waive fees. The foundation is a treatment centre. We have one in Brisbane and one in Melbourne. We also run a day program in both states and run psychological and dietetic services for sufferers, as well as family and sibling support. We teach the entire family unit to provide support for the sufferer to reinstate nutritional needs and help the client weight-restore. Our approach is a non-judgmental, compassionate, supportive, homely environment. Many of our families describe Bronte House and Rebecca's House as their home away from home. We also train doctors and fly from overseas world leaders and experts, four of whom will present at the Bronte Foundation conference, "Looking for Answers in Treatment and Prevention"', in March, 2005. We also are working on a prevention program for schools.
helena asks: Do you think you will be opening a Bronte clinic in Sydney any time soon?
Jan Cullis: The need in Sydney is great. We are overwhelmed in both Melbourne and Brisbane and now have many people calling from America and England. We will definitely need more centres to cope with the demand. However, to open a centre in Sydney, we need financial resourcing. So the community of Sydney needs to get behind the Bronte Foundation if this is to happen. We are very aware of the need for a centre there, with many people from Sydney in both the Melbourne and Brisbane clinics having to relocate in order to receive treatment. Perhaps you could lobby the community and the government for financial support so that the Bronte Foundation can open a centre in Sydney for residents of NSW.
Alicia asks: Does our health system do enough to fund programs for people suffering from anorexia and bulimia?
Jan Cullis: Absolutely not. Bronte's book called Bronte's Story came out in September. We have had hundreds and hundreds of e-mails and letters from people who have read the book telling us their stories; all of them seem the same: that they have fallen through the gaps, that there has been no treatment for them. And we know now that there are huge gaps along the continuum of care. Eating disorders are the poor relation of health care. They should be a high priority area and they are not.
Bri asks: I can't understand why the government won't fund your program, what is their reasoning?
Jan Cullis: The reasoning is that we have treatment, so they refer to what little bit of treatment there is available as appropriate. The Victorian Government is looking into the needs, but not from a medical viewpoint, more from a youth affairs viewpoint. We need the community to put pressure on the government to address the gaps in the system. This is how we actually started the Foundation, by filling a gap.
Deborah asks: Does the Bronte Foundation handle bulimia also?
Jan Cullis: Absolutely. About 50 percent of our clients suffer from bulimia. We also treat people who suffer from obesity and binge eating disorder and make no distinction between these illnesses. All our families and clients are treated with equal respect and compassion and given the same support.
madaca asks: Does treatment fall under a fixed set of techniques or do you find that causes and cures defy simple analysis?
Jan Cullis: We don't have a definite set of techniques. We have a comprehensive set of understanding of the thinking often experienced across the range of eating disorders. We respond individually to each and every case.
Grug™ asks: Does Bronte work full-time at the clinics and if so what's her role?
Jan Cullis: Bronte doesn't work at the clinic at all. She comes in and spends time with siblings, takes them out for coffee or lunch. She is now involved with developing and writing the prevention program to go into schools and will be working with school students, staff and parents next year, which she is really looking forward to and is really excited about. She has been busy this year writing her book.
Angie asks: If someone is under 18, is there any way a parent can make them get treatment against their will?
Jan Cullis: Yes, under the age of 18 you can use your guardianship. Although the best way would not be to force an individual. Remember this is an illness often driven by anxiety, therefore to force someone into treatment may increase their anxiety and increase the severity of their illness. It is far better to try to help them see that you want to understand what they are going through and support them. We have a range of books available at the Foundation that have been instrumental in turning sufferers' attitudes from denial to acknowledgement and a readiness to recover.
A2 asks: Why aren't antidepressants or appetite stimulants effective to treat anorexia?
Jan Cullis: There is little evidence to support that antidepressants are effective, although we know that an individual's mood is improved sometimes when they take them. We don't really understand the biochemistry and neurochemistry of the body really well. There are new medications, mainly atypical anti-psychotics, that appear to be helpful in reducing anxiety and when you reduce anxiety, you improve the likelihood that sufferers can change their behaviours and thinking.
itsjustme asks: Is it mostly teenage girls who are susceptible to anorexia or does it affect other age ranges and males?
Jan Cullis: We think there may be a cognitive lag. This means an inability to integrate increasing complexity that is involved in young people, particularly females, developing the coping behaviours that we see in anorexia and bulimia. Therefore, it appears that these illnesses are age related. However, complex change can happen at any time in a person's life, therefore at any age a person can become overwhelmed and develop an eating disorder. We do see increasing numbers of males, particularly young adolescences and young adults, presenting for treatment for anorexia and bulimia
SorrySammie asks: What medical problems can anorexia cause?
Jan Cullis: Osteoporosis, organ failure, heart problems and a whole range of life-threatening conditions caused through malnutrition … and of course, death.
sparkle asks: Jan, how have you come to see the condition in the way you do, when so many view sufferers as not wanting to help themselves?
Jan Cullis: I started to listen with my heart rather than my head and if we truly seek to see within another, you cannot miss the inner child. Everyone deserves to be nurtured and loved and understood. If we only look at the presenting behaviours, we will miss the true self so often trapped inside. It took me a long time and a long personal journey and I am forever changed as a result and feel that my life has been greatly enriched through this experience.
FFTRAV asks: Just interested, when one goes through a disease like that, what prevents the person from seeing the negative effect it has on them? Surely when your ribs show, you have gone past a good body.
Jan Cullis: These sufferers can't see their ribs showing. When they look in the mirror they see an obese elephant. It's us who see the ribs. Trust is required by them to believe our eyes rather than their own.
Ged asks: I know in the program, the twins do see each other as falsely overweight, but do they see outsiders walking down the street in their correct weight or is this disproportional also?
Jan Cullis: The interesting thing about the negative mind is that it sees others accurately. It discriminates against the self, saying others can eat anything they like but you are different, you are the exception to the rule. If you ate normally you would be huge. So once again, it makes it even more difficult for the sufferer to see the truth and trust is required to believe somebody over their own thoughts. That's why trust is such an important part of the Bronte Foundation treatment. We spend countless hours building trust between the therapists and staff and the clients and their families. This is why our program is so effective.
cherie asks: How would you say would be the best way to approach the subject with a preteen about why it is so dangerous to go on such a strict dieting routine?
Jan Cullis: Assuming this person does not have an eating disorder and is just dabbling with dieting, I'd go beneath the dieting behaviour and talk about what is not being expressed, ie, feelings about self, expectations, success/failure, fears, why this person is dissatisfied with the way they look and try and develop some competency and connection.
Em asks: As a reformed anorexic, where can you go for help when you have those feelings coming back and you don't want to let family know what you're going through?
Jan Cullis: It is most important to let the family know what you are going through. They are the best people to help you work through this. You can also come to the Bronte Foundation, read Bronte's Story, read A Journey Shared through the Foundation. Have your family read both, because they both talk about the importance of communicating, talking about the feelings you are having. This is your way of seeking clarification and holding your negative voice at bay. It is therefore imperative that they share the journey with you. It is not weak if you ask for help, it's courageous and it doesn't mean that you failed.
Sissa asks: What are the key factors in encouraging sufferers to embrace life choices that break out of the negative cycle of dietary control and self hatred?
Jan Cullis: I would say within us we all have a desire to know what our potential is. It is a huge risk to take when sufferers break free of their eating disorder. What if I am nothing without it? What if I am a horrible bad person? What if nobody likes me? What if I hurt and let others down? But I would argue what if the opposite of all of that is true? You will never know unless you take a risk and try to live without your eating disorder. It is so important that you are supported on this journey. At the Bronte Foundation we make sure that no one makes the journey alone.
anna asks: Do you think it is ever possible to cure anorexia or will patients continue to suffer? My friend has been in and out of hospital for 20 years.
Jan Cullis: I don't know that it is possible to totally get rid of the negative thoughts. However, they can be diminished so that joy replaces the part of the mind that they took up. I have seen people recover even when they have been sick for as long as your friend and experience freedom from their eating disorder and freedom within life. However, we teach all of our clients how to guard against the negative voice regaining control over their lives.
Jill asks: What is the simplest piece of advice you would give a carer of an anorexic child?
Jan Cullis: Never give up! There is always hope. We were told by Bronte's doctors that there was no hope. That she fell into the five percent who die. We were told to let her go so that we could get on with our lives and she could be at peace. What a tragic piece of advice that would have been had we accepted it. Bronte is living proof to never give up. She is the embodiment of hope. In fact we call her hope in action. Look beyond the behaviour and remember what your child was like, their true self before they became sick. They are still there, they are just too scared to come out.
Interviewer: Jan, do you have any last words for those that have joined us tonight?
Jan Cullis: I'd just like to say that the Bronte Foundation needs your support financially, morally. We need advocates for those who cannot speak for themselves. We need the community to get behind rolling change. Often grassroots change is the best way to get the ball rolling. Let's hope as a community we can make a difference. Thanks for your support.
Reporter: Peter Overton
Producer: Glenda Gaitz, Sandra Cleary