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I have never lost hope

ANOREXIA is a word that no parent wants to hear or have to deal with.  My daughter was officially diagnosed with anorexia nervosa when she was 17 and doing Year 11, but our battle with this illness had begun at least 3 years prior to that. This is not an easy story to write. We have been through some terrible times as a family but through all this I feel we are stronger and closer than ever.

My daughter was always a good child. She never had tantrums, always excelled at school, was popular, a gifted musician and a very high achiever. She was tall with lovely blue eyes, long brown hair and was always very slim. She was in all the orchestras, bands, had numerous music colours and was always doing before and after school activities.

We had just returned from three years living overseas, and my husband and I were both very busy trying to establish our business. Life was very busy and I think that is why initially we missed the beginnings of anorexia starting to invade our daughter. It started with her wanting to make her own lunches and changing small things in her diet, which we thought was okay because she was starting to go through adolescence and wanted to eat a little healthier.

Then a series of events happened that changed all our lives. I had to go into hospital; my daughter had an accusation made against her by girls she thought were her good friends at school which turned into bullying; and my grandmother died.  The bullying was relentless for a few months. The school handled the situation poorly; first parents become involved, then lawyers, and in the end our daughter moved schools. Although it was a dreadful situation for all concerned, we thought she was handling it well.

Our daughter started at a new school and immediately made friends. She seemed to cheer up but we noticed that her eating habits were changing again.  We knew we were beginning to have a problem so we made an appointment with our local GP to see if he had any solutions, although I think I was still in some denial about how serious the situation was becoming. It was decided that our daughter would attend the GP’s office every couple of weeks to be weighed and have a discussion with him. She was also referred to a psychiatrist who reassured us by saying she had a small eating disorder she may grow out of. For the next eight months, things seemed okay.

Then things went rapidly downhill with the school calling every second day to say that she was fainting. The many trips to Hospital Emergency began and so did the roller coaster of trying to get some help. The problem was her age as Adult Psychiatric Services said she was too young to be covered by them and Adolescent Psychiatric Services were reluctant to take her on because she was getting close to their cut-off age.

After more than a handful of trips to the Emergency Department, with my daughter losing weight very quickly, becoming medically unstable and refusing any medical help, she was admitted to an Adolescent Psychiatric Unit. Numb is the only was the only way to describe how I was feeling; numb and tired and distressed.

Where to from here? How did it get to this? What did I do wrong? Was I a bad parent? These were just a number of the questions that I asked myself as my daughter became sicker and sicker. We meet with the psychiatrist the next morning who explained that our daughter was indeed very ill and that we needed to prepare ourselves for a long hard road of “revolving door” admissions. Still refusing to eat, she was then admitted to a Children’s Ward where she had a nasogastric tube inserted and was put on bed rest.

After this first admission, she was given a paediatrician and the weekly cycle of outpatient appointments began. I started to hate Friday. Every week we attended the clinic where she was weighed, saw the dietician to discuss the weekly meal plan and finally saw the paediatrician who would check her blood pressure and heart rate. Then the dreaded decision to see if she needed to be admitted again which was usually the case. In between all this we still had many trips to the Emergency Department and I have lost count of the amount of admissions she has had including Christmas and school holidays. The revolving door was spinning fast.

It is hard to remember all that happened during that time. I still had two younger children, a husband, grandparents who didn’t understand what was happening and a business to run. The best decision I made during this turmoil was to become informed about anorexia and eating disorders and to make sure that we separated our daughter from her eating disorder. In our mind we were dealing with two different beings, one our lovely daughter and the other a monster who was trying to take her from us. I started to attend a Carer’s Support Group and started reading all I could on the subject.  Things didn’t improve, and a normal life for us became medical and psych appointments, hospital admissions, mood swings, tantrums, weight loss and school. Family life became anything but normal.

Finally after an admission to the adult acute psychiatric unit we convinced our daughter to be admitted to a private eating disorder programme in Melbourne.  She remained in this clinic for over three months and steadily gained weight, so we were very optimistic. Once she was discharged she began the day programme three days per week and continued to do her Year 12 part-time but it didn’t take long for her to begin losing weight again.

We were still on the never ending cycle of medical and psychiatric appointments. My husband and I found family therapy invaluable it helped us to understand what she was feeling and going through and it helped her to understand what we were experiencing. It was decided from the beginning that what was said in the room remained in the room and that there would be no other discussions unless our daughter needed it as well as no consequences from what was said by either side.  Through this whole experience we gave her unconditional love and spent many hours gaining her trust so she could come to us for anything knowing we would not judge her.

While Year 12 was completed successfully and she was accepted into tertiary study, her eating disorder remained strong. We could see her trying so hard to fight and she changed psychiatrists, began to see a dietician and even tried psychologists, but she was to lose the battle again. She completed first year with Honours but by that time she knew that she would not get through another year so she deferred to try and get herself well again.

Things continued to go downhill but she had become even more skilled at hiding how sick she was from everyone. Midyear things came crashing down in a dramatic way. All the professionals she had been seeing were very concerned for her, and after a Family Session, our therapist became concerned for her life. He contacted her psychiatrist, who contacted her paediatrician who in turn contacted the Hospital Emergency and we had to take her for admission again.

On arrival at Emergency, she had her vital signs and bloods checked and then the Emergency Doctors tried to send her home. I objected and it was only then that the doctors contacted her paediatrician and the admitting officer of the Acute Psychiatric Unit (that is where the eating disorder unit is housed) that they finally began to listen to us. At 4am she was finally admitted and it was then that she began crying and pulled me close and thanked me for helping her. My heart sank because my poor daughter was so tormented and I couldn’t fix it.

After being admitted, she gave herself over to her eating disorder. It did not take long for her to be admitted into a Medical Ward for refeeding and hydration. There was nothing I could do except sit with her and hug her and cry with her. Later that afternoon she began to complain that her legs were hurting, then her arms, stomach and heart were painful.  Doctors were called and tests were carried out. It seemed her bloods were not so good and that her muscles had started to be broken down by her body for energy. Things were beginning to go downhill medically and the next few weeks were very tense.

After few weeks she was transferred back to the Eating Disorders Unit. She was very frail, only able to walk with the aid of a walking frame and needed physiotherapy daily.  Finally after another few weeks in hospital, she was discharged.

Things seemed to improve for my daughter from this point. She found a fantastic psychiatrist who specialised in CBT and eating disorders and continued to see her dietician and paediatrician. During this time, she decided that she did not want to return to university. Instead she wanted to get a job and try to move her life forward and put anorexia behind her.

This is just a brief summary of my journey which at times has felt like being on a roller coaster. At times I have felt strong and other times I have cried myself to sleep. I did learn to take care of myself so that I could continue to support not only my daughter but also my other children and my husband. I learned that I couldn’t fix her like I used too when she was little and fell over like I so desperately wanted to.  I cried and despaired for my daughter and wished I could have carried the burden for her, but in the end she had to have the strength and will to fight and my job was to help guide her and fight for her when she was not able to.

It was not my fault or my husband’s that our daughter got sick; she was sick with an illness. We decided early on that we would not hide that she had anorexia and that she was terribly ill. She has an amazing peer group who have supported and visited her when she needed it; they have also not judged her.

I would say that our daughter is now almost fully recovered. “Recovered” is hard to define; she still has a few ongoing issues but she is living life to its fullest and enjoying herself. She now has a full time job and has moved out of home. She is still under medical care and sees her psychologist but overall life is really good for her. Her 25th birthday is approaching and we are going to celebrate the birthday that we were told she wasn’t going to reach. The one thing I am really proud of is that after all our struggles, heartache and pain we are all closer as a family. My daughter and I have a very good relationship and more importantly she has a good relationship with her siblings. Not long ago my son said to me that he and his younger sister never felt neglected or forgotten during her illness. That we always made time for them, took them away when she was in hospital and continued to be a family for them as well. That made me cry; I always worried they got caught in the cross fire of this illness.

Finally my daughter has found some peace and can enjoy a rich life without this monster hanging over her continually.

Contributed by Tracey

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