Reflection by Helen
I was 27 years old, in a happy relationship and with a good career when anorexia first entered my life.
Over the past 13 years, the eating disorder has been detrimental to every part of my existence. It has not just physically depleted me but it turned me into a hollow, numb, cold creature, driven by routines and rules. I lost relationships & I isolated.
For most of these years, I continued to work but it served as an escape from the illness and a way in which I could disguise how sick I truly was. I could appear to still function very well, despite no feelings of joy for over a decade and the debilitating anxiety when I stepped out of my routine.
Through all these years the true me – the person who loved life, loved food, loved resting and was body accepting at a healthy weight… the woman who loved laughing and crying with her friends and family, the child who loved to play and giggle – she was still inside but she was trapped within a cruel illness – caught in its chains, desperate to be rescued but unable to show herself or ask for help.
Earlier this year I turned 40 years of age. I spent my birthday alone, not able to face ‘social’ events in which people might want me to eat or drink…and let’s not mention sit!
At this milestone age, it hit me more than ever what this illness had done to me. My peers had families of their own – spouses and children, holidays, laughter in their homes, love. I was alone, cold and suddenly really very sad.
Over the years I have cycled through treatment attempts. I have had more than one inpatient admission. I have also had recovery coaching and attempted recovery at home, still living alone – each time with some success but never real or lasting.
I, therefore, realized it was time to truly face recovery head-on. Recovery and whatever it entailed could not be worse than one more day in the illness.
At the age of 40, depleted in every sense, I returned to live with my parents who agreed to support me in any way they could. And, quite frankly they have been incredible. I am putting them through an experience no parent should have to go through, but they are there when I need them the most. They are determined and positive when all I can do is cry and say, ‘no more’.
At the two month mark, I reflected back on all that I have learned so far. Perhaps, in sharing what the recovery experience is like from the perspective of a person with the illness, it can help parents or caregivers understand a little more:
- When my anxiety is rising it’s usually because the eating disorder has become more powerful, I’m engaging in mind games, feeling exhausted & generally pulled in two directions.
- When distress is worse it’s often because the true, healthy me within, desperate to recover, is feeling exhausted, defeated and worn down from the battles inside.
- In the moments I scream and push away people trying to help, the inner me is at her most despairing. Inside, I am desperate to escape the illness and I just want people to comfort, feed and reassure me that I am safe. Slowly I am learning to be vulnerable, stop pushing away and accept the help I really need and deep down want.
- When I commit to and put in recovery action and avoid engaging in mind games, the anxiety is much less, counter to what the eating disorder tells me! If I face a fear, although at the time it is hard, afterward there is a sense of victory and accomplishment.
- If I let up even slightly on the rate of recovery attack or challenges, the eating disorder will try & worm back in fast!
- If I allow too much time to pass between eating, the eating disorder thoughts quickly become overwhelmingly more powerful.
- Weight gain is ok… flesh on the body is ok. The eating disorder hates it but I can accept & cope with it.
- Recovery is exhausting, overwhelming at times and all-consuming. It’s definitely a marathon, not a sprint as FEAST says. But sticking with it is the only option I see.
- There are incredibly dark times when I want to crawl out of my skin with anxiety and the thought of carrying on feels unbearable. It is important to remember that these moments come but also pass – everything is fluid.
- Interspersed with the dark moments are moments of achievement, glimmers of hope, and occasional exhilaration.
- Anxiety masks hunger. The hunger is there and comes through if I can remain calm.
- There are good and bad days and on bad days the brain creates a variety of stories and feelings for why I can’t ‘do recovery’… but that does not mean it is not possible!
- I do really love food, I like eating, I want to sit… I’m really very tired, very hungry and my body deserves some long term TLC. It’s a process learning to listen & respond to my body signals but it’s getting there slowly!
- I never knew I could swear so much but sometimes it really does help!!!
- This recovery process is the hardest thing I have ever done but I’ll take it any day over another moment in the cold eating disorder existence.
- I already knew that I was very fortunate with my parents, but having moved back in with them for a while to focus on recovery, I have learned just how amazing they really are. They have put up with tears, tantrums, slamming doors, frustration and anger and they have patiently stayed beside me supporting and encouraging.
- Eating disorder recovery is more than a full-time job. In the past, I told myself I could recover while working, studying or traveling. I believed I could recover without any help. Those were eating disorder tricks. I am not saying that nobody can recover alone but it is 10 times harder. Although asking for and accepting help, while putting my life on hold was terrifying, it is the best thing I have ever done.
Overall, I’m learning a lot in this process about myself, eating disorder recovery and this illness.
The recovery journey over the past two months has been messy, muddled and felt very chaotic. There have also been markers of success glimmering through intermittently that offer small rays of hope in the darker moments.
Without my parents’ support I do not think I would be at the stage I am now. They have had a challenging learning curve understanding how to best help me through this process.
For those reading who might be in a similar position, these are some of the things that I have found helpful from my parents support:
- Consistency with the recovery approach I have chosen to commit to and unwavering reassurance that the amount I am eating is not ‘too much’, I am not ‘gaining too fast’ or that I could not be resting ‘too much’.
- Just being present and offering unconditional love. There are times I have laid on the bed sobbing and Mum has just been with me, stroking my hair, allowing me to feel loved and comforted.
- Remaining calm and present, despite my screams, anger, frustration, and tears. My parents have had to learn that if I am shouting, it’s not them I’m really shouting at, it’s the illness, anxiety, and fear that can make me react in crazy ways!
- Not allowing me to grow complacent in recovery but to keep encouraging me to face fears head-on. Recovery is exhausting and frightening and complacency is an easy state to reach!
- Support in facing challenging situations – fear foods, eating out…. Mum and I have become experts in the local coffee shops and cakes which has helped keep me accountable to face the challenge and to normalize the situation.
- Saying the right thing is helpful! This is always a grey and volatile area! Not commenting on my weight gain/appearance has been key. Not commenting on my food or theirs in a negative way (indicating that something is ‘fattening’ or ‘too much’ or ‘unhealthy’); never making fatphobic comments about themselves, others, or me!
- There are times when celebrating progress with my parents has been important, but largely I need to be pushed to eat more. I need to feel safe that there is nothing to fear from food!
- Overall the most valuable support I’ve had is my ‘cheerleading’ team…. People to talk to, people to help me distract, people to stop me from isolating myself.
At the end of the day, I have had to learn that recovery can only come from me. I have to be committed. I have to be accountable. However, recovery is a very long road and I need my army with me because there is still a long way to go!