When Carla asked me to write a blog about her eating disorder from my perspective, I was quick to respond: Yeah sure! But when I started to jot down some notes, I froze. Where do I start? So much has happened in 18 months. So many changes in Carla, so many emotions were felt all at the same time. Worry, anger, guilt, grief, helplessness, powerlessness, frustration, exhaustion, fear. As a mother I had to put all the emotions behind me and move forward in helping and supporting Carla and get her back on track, get my daughter back!
Looking back, I had a lot of knowledge gaps about eating disorders. I had never known anyone with an eating disorder or someone who knows someone with an eating disorder. I came from an Italian culture where food was the centre of everything. Now, after 18 months and looking back, I feel there were two main stages I went through whilst learning about the eating disorder and supporting Carla through this madness.
Stage 1: Learning to accept that the eating disorder is real and it’s here to stay
Getting a phone call from my son telling me that Carla and himself both thought she had an eating disorder. I went into immediate shock, disbelief, and confusion! My thoughts in my head were running a million miles an hour: No way! Carla? What do you mean? How did this happen? She’s smart, she’s athletic, why? What did I miss? What could I have done different? No way, this only happens to younger girls in their teens. I immediately went to Adelaide to stay a few days because naïve Rosa thought “Oh, it can’t be that bad! I’ll just go to Adelaide and stay a week and chat to her, go with her to see a therapist/doctor, cook a few home-made meals, she’ll be right in no time”. Looking back, how naïve was I? I had no idea! Carla had become a stranger.
Initially my emotions were as I have described as above – shock, confused and denial. But there was also some guilt eg what could I have done different to prevent this from happening, is this my fault? I should have taken more notice of her behaviour when visiting, why didn’t I know about this sooner? I was so focused on the how and why. As Carla’s Mum I have my own theories as to why Carla, the perfectionist, the high achiever did this to herself. Note my last few words – “did this to herself” there was some blame. How and why could she do this to herself? What was she thinking? Looking back, none of this was important.
I tried to cook for Carla. I thought if I cooked a meal, she would just eat it like she would normally eat my food since the day she was born. I thought if she could eat a little, just a little of my cooked food, that would give her a little more variety of nutrients, carbohydrates, and protein. Fuck I had no idea how difficult this was going to be. She wouldn’t have a latte down at the local coffee shop with me or even have one bite of a pork chop. She refused all food I offered. Anger and helplessness started to creep in.
The eating disorder affected the whole family. I felt extremely anxious, powerless, and lonely. I found myself isolated with knowledge gaps and all the challenges that I was about to face with no professional help in how to support Carla. I very slowly learnt how to support Carla. Only after a confrontation I would realise “oh that didn’t end well. I should have gone about that differently”. To cope with the situation, I initially didn’t share with the rest of the family or any close friends. It felt like a nightmare. Throughout the whole experience I cried a lot while having a shower or in the car before and after work as the chances of someone finding me in these locations was minimal. I isolated myself from my friends and family, ignoring phone calls and text messages because I just could not understand what was happening, so how the hell would anyone else. I kept thinking; surely why can’t she just eat more? It’s not that hard, how can a girl brought up in an Italian culture have an eating disorder?
Carla was extremely paranoid about anyone including myself being around while she cooked or ate. For this reason, family dinners were out of the question. Carla would eat on her own and avoid family functions. Our relationship became extremely fragile. Communicating with Carla became difficult. The topic and direction of conversation was completely controlled by her. If we forced the conversation in a direction, she was not happy with, we would often be met with anger and rejection. On top of that, I also got extremely confused. If she heard someone say “oh I’ve put on some weight lately” she would respond to us by saying “people shouldn’t say that in public” but then on other occasions she would complain that she wanted to be treated like a normal person, a person who doesn’t have an eating disorder. Huh? I got so confused. One minute she wants us to treat her like she has an eating disorder hence can’t talk about this and that and then other times she wanted us to treat her as not having an eating disorder.
I felt extremely frustrated. My funny, bright, happy girl was no more. I knew I was her punching bag, let off steam but at the same time I too had to let off steam. I was also worried how her brother was coping as he was not only living with Carla, but he was her greatest support throughout this journey. I had to keep reminding myself repeatedly that the reason she was acting in that way was because of the illness. My Carla was in there somewhere and I wasn’t giving up until she surfaced.
Carla withdrew from family and friends and became socially isolated and was paranoid about eating around others. Catching up with family and friends meant being exposed to drinks and food which made her extremely anxious. A childhood friend of Carla’s wanted to catch up for tea in Adelaide and messaged us to find out where to meet for tea. OMFG!!!! Carla was sprawled over the couch bawling her eyes, having a complete meltdown. She just could not bring herself to go out for tea! Both my son and I were trying to convince her it is only one night. I even tried to get Carla to google a venue of her choice with a menu she would be happy with. “Mum! Mum! I just can’t do it!”….
I looked at one of the menus and I commented on the ‘chicken salad’ and how healthy that would be protein and vegetables. Carla’s reply: “But mum, I don’t know what is in the salad dressing!”…. In that moment the world just stopped for me.I was just lost for words. The realisation that this eating disorder was not going to be a push over started to make me feel fearful of Carla’s future. It was just so exhausting and frustrating.
Carla also became rigid in her daily routine and kind of ritualistic eg the way she made her long, long, extra-long black coffee and the way she used to stove cook her oats with grated zucchini. She became obsessed with daily routines and exercises. Obsessions around the time she did things such as when she ate meals and snacks, when she went for walks and runs and how far, when she went to the gym, when she had a black coffee.
Carla lived with her brother in our unit in Adelaide. One time I had asked her to stay at the unit and look after our pet dog for a couple of hours while my husband, my son and myself needed to attend to some business. This meant she could only get to the gym an hour later than usual. The confrontation did not end well. She got extremely upset and emotional. It was all about her needs and her routine and no concern, empathy, or compassion about anyone else in the family. But I had to keep reminding myself, this is not Carla, this is the eating disorder.
Her bubbly, dry, witty sense of humour had evaporated. There were no more jokes, no more banter. Suddenly, my vanishing daughter seemed like a grumpy stranger.
After some time, I slowly realised I cannot “fix” Carla by forcing my will onto her. I realised that she was going to need to find a recovery path that made sense to her through therapy which she was already on a waiting list. I also realised I needed to listen to her pain without judgement and acknowledge the upsetting situation she was facing. This led onto Stage 2.
Stage 2: Accepting and Supporting Carla while in therapy
The one thing I was mostly grateful for was that Carla did recognise she had an eating disorder and took the initiative to seek help from the doctor. The doctor sent her to a psychiatrist and after many assessments she got the formal diagnosis of having Aneroxia Nervosa. She was then put on a waiting list at an eating disorder clinic. Unfortunately, the most damage to her health was done during the 5 months she was on the waiting list.
She was rushed to emergency with a ruptured stomach ulcer and nearly lost part of her stomach and bowel. The doctors found enough tissue surrounding the rupture to try to heal on its own. They inserted a drainpipe from her stomach through her nose to drain all the bile and a feeding tube directly into her bowel. This way nothing had to go via the stomach giving it time to heal. She was also connected to a drip in both arms each day and night.
Carla commented after surgery how frightened she was and how it was the scariest moment in her life once the doctor gave her the verdict of potentially losing some parts of her digestive system. I thought “great” she will start eating again, properly. I thought wrong!
After a few days the doctor decided it was time for Carla to eat some mushy food. Well Carol decided to make an appearance. Carol was the name given by Carla to the eating disorder thoughts. Carol decided that having a feeding tube in the bowel plus eating mushy food was too many calories considering she was bedridden. One evening Carla rang me extremely agitated, anxious, and emotional. “Mum, I have a feeding tube in my bowel and now I have to eat mushy food. That is extra calories!” I felt my jaw hit the ground. I couldn’t believe what I was hearing especially when she didn’t want to go through this again and how she’s never been so scared in all her life. I thought FUCK! CAROL IS BACK! I tried and tried to explain how nutrition was important to help heal her ruptured ulcer. But it was like talking to a brick wall. Carla was focused on the extra calories.
By the time Carla got out of hospital she had faded away. The surgeon had ordered her not to exercise until she had a follow up check-up. When Carla got home from hospital, she did not like the way she looked. She was so underweight. It was great that she wanted help, she wanted to get better, she didn’t want to live this life of thinking about food constantly and become socially isolated however she was still on the waiting list for the eating disorder clinic.
Being a mathematician, once I identify the problem, I like to examine all possible pathways and possible solutions. I like to plan and then work towards solving the problem. So, sitting back and waiting is not a strategy I like at all. I started to feel fearful, uncertain, and worried for Carla’s future.
Once Carla got into the eating disorder clinic about one month after her surgery, I was relieved. She was having a weigh in and seeing a psychologist on a weekly basis. These next 12 weeks of treatment proved to be even more difficult, and her irritability and rudeness increased another few levels. Her weekly Friday weigh ins had to show an increase in weight otherwise she was threatened to be dropped from the eating disorder clinic and recommended for hospitalisation or a residential treatment centre.
All she would think about was the food she had to eat, constantly. Being forced to eat “fear foods” twice a week and being forced to eat out once a week meant her anxiety, her irritability, her emotions were exacerbated. Carla got extremely restless and could not sit and relax. She had to get out and walk. With her treatment she was not allowed to go to the gym or go for a run. Also, she was still recovering from a ruptured ulcer. She took every word we spoke literally and this made it extremely challenging for myself and my husband to conversate with her. This was not my daughter. This was not Carla and I wanted Carla back!
Once Carla started her weekly therapy, she would report back bits and pieces. I did appreciate Carla telling me “Oh mum next time you want to take me out for a coffee, don’t let me choose which place nor time. You select the place and the time”. This was important as this would help Carla get out of her obsession with her routine schedule. This is exactly what I needed. Someone to tell me what to do to support her, what I could let her get away with and what not. However, I did find it interesting that the therapy was about gaining weight and not so much dealing with her mental state. It made sense though. How can you deal or improve mental state when it is undernourished?
There were many hurdles that Carla had to work through other than just getting back to eating normally. Carla has only just started eating pasta again, thank goodness! How do you explain to an Italian Nonna, her granddaughter won’t eat pasta?
From when your children are born, we as parents are always solving whatever issues arise whether it is a health issue such as a broken arm, tonsilitis, or dealing with a bully at school or a learning difficulty. I learnt that it was OK to listen and acknowledge Carla’s difficulties without always providing solutions.
Carla made it clear when she would share her thoughts that she wasn’t expecting me to fix them. She had professionals providing the advice and strategies to deal with the eating disorder. As her mum, I just needed to be a listening ear without judgement. I had to be compassionate, calm and most of all, patient!
I learnt very quickly that the eating disorder wasn’t her choice; it is a mental illness. It wasn’t Carla not choosing to eat, it was Carol. That voice that yells at her that she must NOT eat.
Recovery hasn’t been smooth. The fight isn’t completely over but Carla is a strong young woman who has got this far in her recovery because of her massive strength, courage, resilience, and determination to beat this anorexia voice. There have been many ups and downs, but she has been set on winning (one of Carla’s personality traits is being competitive to win) as she admitted to not wanting to live a life constantly thinking about food.
Only recently at Christmas, my son commented how it was the first time since she was diagnosed with anorexia that he could have a banter with Carla and how much he had missed this part of Carla’s personality. I too, have once again enjoyed her company, her giggles, her smile. Finally, I can see our Carla re-emerging. She is slowly finding her way back.
Relapse is a possibility, but I will continue to do whatever it takes to keep her safe and healthy. With family support, love, and my dad as her guardian angel, we will get through this, even if it takes longer than we anticipated. If there is improvement there is hope.
Tips and Advice:
- Eating disorders can affect anyone at any age.
- Why a loved one develops an eating disorder shouldn’t be the focus. There is no single cause for eating disorders. Often, it’s a way for them to deal with other overwhelming emotions and often have minimal to do with weight and food.
- No one can help your loved one until they ACKNOWLEDGE their disorder and WANT to get better.
- Encourage your loved one to speak to a professional the earlier the better. Eating disorders are unique and complicated. They require a team of therapists that have extensive training. There are many doctors, psychologists, and dieticians. However, those that are specifically trained to deal with eating disorders offer so much more valuable help and support and makes a huge difference to their overall well-being. We witnessed this firsthand.
- We must be aware of the conversations we have. Society (we) tends to make comments about our body and weight whether it be about ourselves or about someone else. Eg I ate so much for lunch on Christmas Day I think I will skip tea or She has lost so much weight, she looks really good right now. Unfortunately comments such as these can be a trigger to long-term damage.
- First and foremost, the focus should be on being supportive. Be compassionate. Don’t judge, don’t criticize. Don’t dismiss how they are feeling. Instead ask questions about how your loved one is feeling.
- There will be some resistance, they will argue. Don’t get into an argument. You won’t get anywhere if you argue with the eating disorder, and it certainly won’t help with their recovery.
- Listen! Listen to their pain, the conflict and battle they are experiencing in their mind between their own thoughts and the eating disorder thoughts. Acknowledge their difficult situation that they are facing.
- Be patient, be calm. It won’t be easy and seeing improvement can be very slow but showing that you care can make a huge impact on their recovery.
- Don’t try to “fix” them. All they want is for you to be there and listen to their disorder and/or treatment and share your feelings and emotions with a close family member or friend.
- Read some articles. It will help you to realise you are not alone and open your mind to understand the disorder. It will help to give some insight into your loved one’s aura. It will help to build a stronger relationship during this extremely challenging journey.
