Personal stories

Fiona
Kath

Fiona - Eating Disorder Not Otherwise Specified (EDNOS)

CEED: Can you tell me something about the kind of eating disorder you experienced?

Fiona: I was never overweight as a child and there was never a history of dieting in my family but I was always self-critical. When I was in year 11 I went to the USA as an exchange student and put on a bit of weight. That's when I started dieting, which then lead to problems.

From the time I was 18 'till I was 40 my eating disorder played a large part in my life. I thought constantly about food and I alternated fasting and overeating. My weight would fluctuate hugely and I was in a cycle of either not eating anything at all or eating large amounts.

In my 30's my weight increased as my body changed and my overeating became binge eating. I found it increasingly difficult to fast.

When my weight was up it had a huge impact on my social life, as I became a hermit, not wanting to go out. I was depressed and ate alone, mostly at night. It affected so many parts of my life.

CEED: What made you decide to seek treatment?

Fiona: I had gained a large amount of weight, and then I lost it. I was more comfortable with myself, but something triggered me off and I started to eat again and started to gain weight.

This time I thought I was losing control and I felt like I was on a rollercoster at the top and if I didn't do something I would go right over and not be able to cope.

I realised that there was no quick fix and that I needed help.

CEED: Where and how did you go about finding help?

Fiona: I had recently caught up with a girlfriend who was reading a book that had drastically changed the way she looked at food. She recommended that I read this book, which was anti-diet and all about listening to your body and the messages it sends you about being full and empty. It was very easy to read and understand and immediately made sense to me.

Luckily for me the author is a Melbourne doctor who runs a private disordered eating and weight management clinic and I was able to go and see him.

CEED: Once you had decided to get help how easy was it to access treatment?

Fiona: For 8-10 years I wanted to ring up about a support group. I knew there were services there, but I didn't go. I would always ultimately lose the nerve to contact one of these services.

It was easy to access treatment for me once I decided to do it.

CEED: Did you make more than one attempt at recovery?

Fiona: No, but it took me 20 years to get there!

CEED: Could you describe the program or treatment that was ultimately successful for you?

Fiona: I saw a GP in private practice who specialises in disordered eating and weight management. I also used the book he wrote as a guide. It was simple and practical and I didn't feel any pressure. I couldn't do it alone though, I needed to see him to really put the whole thing into action.

I used the following strategies: - A food diary (I found this somewhat inconvenient and a bit time consuming but it lifted my consciousness of what I was really eating). - I also wrote down my levels of hunger, which made me aware of when I was hungry. - I focused on only eating when I was hungry and stopping when I was full. - I moved my scales to a really high shelf in my cupboard and tried to cut down the amount of times I weighed myself (it used to be 20 times a day, now its once a week!). - I explored my reasons for eating, and my emotions before and after I ate. - I really began to question all the myths that I had held so closely about food and dieting and my weight. I realised that dieting makes you want food more.

CEED: What made sense to you about this approach?

Fiona: It was so straightforward and it made sense to me. It was sensible and I saw results. It worked.

It was also the right time for me to recover.

CEED: What was the hardest thing about it?

Fiona: The food diary! I didn't want anyone to see it and it was a little inconvenient at work in order to record everything accurately. The other thing that was difficult was that you really have to do the work. Your doctor can't do it for you.

CEED: Any setbacks or relapses?

Fiona: I did have one setback, which was triggered by an emotional upset. I gained some weight and my eating increased (especially when I wasn't hungry). I was afraid to get on the scales, but when I did I didn't react.

For me that was amazing. I remember thinking, "What do you need to see a number for".

I also realised that I had an incorrect perception of what I looked like. I was not fat.

CEED: What did you find helpful during this time?

Fiona: My friends were fantastic, I was able to talk to them and that was great. I also found it good to talk to people who had been going through the same thing, people who understood what I had been through.

CEED: Is there anything that was unhelpful?

Fiona: Comments from other people about my weight or how I looked or comments about dieting in general I found really difficult.

I also found anyone who commented about people's size or appearance to be frustrating.

CEED: The best thing about recovery is…

Fiona: Realising that I won't have to spend the rest of my life going through that physical or mental torment and that I don't ever have to deny myself anything again. I have peace of mind as I no longer have a constant, inner battle with food.

I am in control of my eating behaviour and I don't have to follow a regimented diet. It's a wonderful feeling to get on the scales and not panic.

Kath - Anorexia Nervosa

CEED: Can you tell me a little bit about the kind of eating disorder you experienced?

Kath: I suffered from anorexia, which I developed as a ten year old in 1977.

It was very scary as 'back then' not much was publicised about the illness. I recovered physically, but not mentally, I guess, and by twelve, I was considered 'fixed'!

Unfortunately, it recurred when I was 19 until about 22 and then again from 25 to about 30 years of age. It recurred when I was under stress, in situations that I had no control of and when I felt hopeless and helpless.

CEED: What made you decide to seek treatment?

Kath: Complete desperation, threat of losing my husband, career, anxiety about hurting those I loved; a whole multitude of reasons.

I realised that I could not continue to live like I was; the mental torment was so overpowering. My life was not real - I wasn't really living, just surviving, and perhaps had a subconscious feeling of this.

I collapsed on the job at work, which was also strong catalyst for seeking help. Seeking treatment was initially terrifying.

CEED: Where and how did you go about finding help?

Kath: Initially, my GP referred me to a specialist - a psychiatrist, who I saw for 2 years without marked change or improvement. It was debilitating and depressing.

I became a member of the EDFV and attended support groups, which made me feel less lonely.

I went to a seminar that the EDFV organised, called 'Help! Where do you get it?' This was just what I had been looking for… I actually got to hear some practitioners talk and I decided immediately that one of those people appealed to me, so I rang her later and made an appointment.

I spoke to her over the phone first and she was positive that she could help me, which gave me heart immediately. My gut feeling was right! It took some time and much excruciatingly hard work, but a couple of years later, I was much better and I continued to improve.

I even wrote a book on my experiences, which was published in 1999.

CEED: Once you had decided to get help how easy was it to access treatment?

Kath: It was not easy; I lacked so much self-esteem and I hated and blamed myself for being sick.

I relied on others e.g. my GP at first, but after 2 years of a lack of success, tried other avenues. I was so weak and tired with the struggle that it was hard not to just give up.

My GP tried very hard to help when he saw that I was not improving, but public hospitals were impossible to access. This had been my last resort, before going to the seminar where I found someone else - the particular psychologist who helped me to heal.

I did not have the top level of health cover at the time and it was going to cost an exorbitant amount in a private hospital - money that we did not have. I subsequently joined the top level of cover, but of course there was a waiting list, which I did not know if I could wait for. We had already spent so much money on medication and appointments, that I hated myself even more for having an illness that I seemed to engineer myself. Accessing help was embarrassing because of the nature of the illness, it required energy I did not have.

CEED: Did you make more than one attempt at recovery? If so could you explain the types of treatments that were unsuccessful for you and why?

Kath: Millions of attempts! (Slight exaggeration) Psychoanalysis did not work for me… I needed interactive therapy that engaged me and challenged me.

Drug treatment was ultimately unsuccessful; it may have helped me to stay alive at times, I'll never know. The depression I suffered was overwhelming. Medication didn't help me to change my thoughts.

I resented the total focus on weight, which I felt powerless to do much about. I needed to learn tools to leave fear of food behind before I could learn to eat again. Pushing food into me was not helpful.

Seeing professionals like dietitians who were not au fait with eating disorders was terrible - a waste of valuable time and energy; I can remember seeing all sorts of health professionals who had so little knowledge they were a liability to my health.

CEED: Could you describe the program/treatment that ultimately was successful for you?

Kath: I needed interactive therapy, which engaged me and challenged me. Cognitive Behaviour Therapy helped enormously. But generally, support and love worked best.

What helped was meeting a therapist who helped me to outgrow the illness, or the need for the illness by helping me to discover the identity that the illness stole. She encouraged me to explore, to take risks, to learn from mistakes and most importantly, to embrace my humanity. I learned to love myself and I gained resilience. I learnt to deal with my anxiety in other ways; to accept it as part of who I am, yet face it 'head on'.

I needed to learn tools to leave fear of food behind before I could learn to eat again - this is where my therapist was exceptional - she understood my fear and she helped me to deal with it so I could learn to eat again.

I think this fear is something that not all health professionals understand, but it is a vital part of recovery - letting go of fear of lack of control, a genuine fear of food, a genuine fear of allowing oneself to have nice things… to have anything, nice or not.

The therapy that worked best was multi-faceted - not formulaic. It was human. Generally, learning to treat myself with kindness, not hardness helped me to triumph in the end.

Seeing a terrific GP who helped with the medical side was great. This person had a lot of experience dealing with eating disorders and it helped enormously. Seeing a dietitian experienced in dealing with people like me helped too, as did reading as much as I could on the topic and attending support groups at EDFV. There, I gained inspiration from recovered people, who gave me great hope that I, too, could get well one day.

Loving support and faith in me from loved ones helped immensely. I called these loved ones my guardian angels at the time… They helped care-take my life until the fog started to clear.

Ultimately, it was hard work and commitment from a team of people that helped me to recover. On my part, it took an almost super-human effort. Or it seemed that way at the time! But it can't have required super-human commitment, because I am a mere mortal!

We are capable of amazing things, us humans, though, and I know that nothing in my life will ever be as hard as recovering from anorexia. I will experience pain, but nothing as personally debilitating as anorexia. It's hard to believe now, but the bitter memories of anorexia seem light years away.

Part of the success of the treatment was that the illness was treated as a separate entity to myself, and this ultimately made it much easier to fight than it had been previously… It was not all of me! This was such a joy to uncover, but also a huge cross to bear, as once the 'enemy' of life had been alienated, there was little choice but to fight it. It became impossible to live with it; let it continue. So isolating the illness was a very successful tactic.

The fact that I 'clicked' with this particular therapist helped enormously. In many ways, I think successful treatment is about chemistry - there has to be some meeting of minds, I think, a mutual respect. Any therapist worth their salt should respect their clients/patients humanity and struggle. But ultimately the client/patient has the choice with whether to stick with the therapist or not. Without respect both ways there is not much hope of recovery.

Writing helped me to express my thoughts and feelings that the eating disorder masked. I had to write a 'food and feelings' diary daily, which I hated at first, because I felt that my privacy was being invaded. However, it was this that largely 'saved' me because it enabled my therapist to understand how I was thinking and feeling. This was a real key to her helping me to change. I think one of the very difficult aspects of anorexia is uncovering what the sufferer is feeling. I started to write more excessively every day, and eventually my writing developed into a book. But although the writing was a very successful element in my recovery, it is not for everyone.

CEED: What made sense to you about that particular approach?

Kath: The fact that therapy focussed on me developing as a person as well as in the physical sense appealed in particular. I began to understand that my eating disorder was a part of me, not the whole me, with this approach.

Separating me from the illness also made a lot of sense; I wasn't born anorexic, so I knew that if I trusted and worked hard then perhaps I would have the chance of having a 'normal' life.

The multi-pronged approach helped too. Significantly, the approach that focussed on my growth as a person was less threatening and made more sense to me than the previous approaches, which had honed in on food and weight all the time. How I was feeling was important; vital to recovery and as important as eating.

CEED: What was the hardest thing about it?

Kath: Everything was hard at first, but it became easier as I became stronger. Embracing fear was excruciatingly difficult - fear of eating a little bit more, fear of gaining weight or losing control. I feared I would have no control in my life without the eating disorder. I feared living, expressing who I was.

The depression I suffered throughout recovery was, at times, unbearable. Depression was stronger during recovery as it was so painful and difficult to fight the anorexia that I often felt that I was failing.

It took a long time and often there were more backwards steps than forwards ones. Recovering was much harder than having the anorexia… anorexia was safe, predictable; there were rules to follow. But fighting it was scary, unpredictable and tormenting. The strength of mind and discipline it took to 'break' anorexic thinking was immeasurable. It depleted me; it was exhausting and often seemed fruitless. But I had to keep on going once I had started to recover, because I saw glimpses of a new life where I would be less bound, where I could truly live.

Disappointing my family and loved ones, I felt, repeatedly was excruciating. Having the energy to counter the madness in my head was hard. I felt like I was really going mad quite often and I was never at peace during recovery. It was like one long marathon. There were moments of exhilarating joy along the way too, of course, but the courage and strength it took were immeasurable. Just thinking about those times now drains me. I find it hard to believe what I went through, and the strength it took to get out of.

Ceed: Any setbacks or relapses?

Kath: There were many along the way. During recovery, I had a total breakdown at one stage after a setback. I was overwhelmed with grief and depression at this time; I had to take months off work. I couldn't stop crying and I wanted to die. The struggle seemed too hard.

CEED: What did you find helpful during this time? (e.g. support people, activities)

Kath: I was put on anti-anxiety medication at this time, which seemed to help.

Taking a step back from life and accepting that I was sick, and that I needed fewer commitments and responsibilities helped. Not working helped - as it gave me more energy to use to help me to fight anorexia.

Loving family and friends helped enormously; just loving me, being with me.

Distractions helped - like movies, being around a pet, listening to beautiful music. Saying no to people and commitments helped me to feel less pressure.

CEED: Is there anything that was unhelpful?

Kath: Undue pressure was unhelpful. I felt badly enough about myself during setbacks - disgusted, in fact.

People pushing me to eat constantly or trying to bargain with me over food was also unhelpful.

CEED: The best thing about recovery is……….

Kath: Being free of mental torment. Truly living, not just surviving…Being kind to myself again… Having choices in life….Less fear…at peace finally.

Last Updated 23-Oct-2009. Authorised by: Stephanie Jones. Enquiries: Michelle Roberton.