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!
Thank you so much for publishing my reflections here.
FEAST have been an incredible resource throughout my illness and this recovery.
If anyone wants to follow me further or contact me too, can I add they can do so on instagram @recovering_nomad …
Thank you again FEAST team!
Helen x
Thank you, Helen, for your courage to share your journey!
thank you for sharing this heartfelt reflection, advice, and hopeful insight. as a mother of an adult who has been battle anorexia for half of her life, I needed to hear that my presence and support can make a difference when often times I feel like it matters none. I wish you ongoing success in your efforts to recover, like many, you deserve to be healthy and to have a good quality of life. Know that I am pulling for and with you in this constant tug of war against this destructive eating disorder.
Hello!
Thank you so much for your comments and please please know that just being there for your daughter is invaluable to her no matter what she is saying or how she’s reacting.
The real, healthy daughter you love within and behind the eating disorder is still there and still needs her mum!
I never usually comment on posts I read, but I couldn’t ignore this one. You have put into words perfectly how I feel as a 33 year old woman trying to recover from this dreaded illness. I am going to share this with my mum as a means of expressing everything I would like her to know about how I feel. Every single day I feel like a terrible daughter for putting my mum through this, but just reminding myself that it is the illness making me act this way is so helpful.
I truly hope you are still doing really well in recovery (or even better, recovered!!) We are so lucky to have such wonderful, supportive parents to help us try and overcome this.
I think you are amazing for embarking in recovery like you have, and for “putting your life on hold” to do so. If it means a much better quality of life for the sake of taking some time out for a while, then that sounds like a much, MUCH better option to me!
Thank you again, so very much x
Helen, I just came across this and it so hit a nerve for me. As an adult woman, who has struggled for 30 years with this monster, it was nice to see another adult woman. I wish my parents were an option but they are not. Did you do it all outpatient?
Your army will be there right alongside you, all the way. Keep swimming Helen, you’re amazing ❤️
Thank you so much Jan… I consider you part of my army too!! X
What an incredible and powerful piece of writing that will help so many!
Thank you so much… I hope it can help others. X
Helen, your words are powerful and BRAVE! We need your voice! Holding you up in strength and validation as you journey to lasting recovery!
Thank you so much!
Keep fighting Helen, it’s so much better on the other side!!!
Thank you…
I hope to be on that better side soon!!
Helen
Wow, I have goose pimples reading this account.
Hurray for Helen and her parents.
And how totally validating of all we parents are doing as ‘standard’ for children and adolescents.
How helpful to get confirmation from such a self-aware account, that what we have guessed correctly that our sons and daughters are scared, and they do want our help, even while they make lavish use of a rich variety of swear words.
I would like Helen’s story to be seen by providers of treatment for adults, who make such poor use of parents. And for the organisations and government bodies who write treatment standards for adults, to look carefully at the successes of treatment within the family.
Thank you Helen. I will share as widely as I can.
Hey Eva,
Wow… thank you so much for reading my words.
I truly admire all your work and it means a lot that you found it so helpful.
Yes… I’d love more parents of children with an ED to understand better what their children trapped behind the ED will really be feeling. How terrified and vulnerable and tortured they are feeling despite what they say or how hard they fight!
And definitely adult services must change and involving family more would help in so many cases. I’ve seen things in adult services that make me shudder and border on neglect, so if I can help in any way make more changes I will!
Thank you for all the work you do,
Helen
Helen, there were so many “yes” moments in reading your words, thank you for sharing your journey.
Thank you…
I’m happy it resonated for you,
Helen
Thank you so much for sharing your journey. It’s is really helpful to know I am doing some of the right things for my daughter and also how I could be of more help going forward. Thankyou!
Thank you…
I hope that things are going well with your daughter and she is lucky to have you,
Helen
Thank you Helen, from a mother who just loves her daughter and have been lucky to find the right therapist!
Wow! How I see myself as I read but still battling at the age of 52. It’s an inspiration to read and I wish I was as strong as you. I will follow you and hope that I am as strong as you and beat this horrible life! I’m exhausted now….
Thank you so much for reading my account.
I’m sorry that you too are dealing with this illness and I know it’s exhausting- it really is but if I can take steps to overcome this then anyone can and I 100% believe it’s never too late to recover, no matter age or length of illness.
Believe in recovery- it’s part of the battle!
Helen x
As a parent of a 38 year old daughter it was very helpful to read your story. So much is written about teens and young adults its nice to hear from an Adult. One of the saddest things about this terrible disease is the isolation I see in my daughters life and at an appropriate time I hope she will read your story and reach out to you.
Always hopeful
Paula, we agree and were thrilled Helen was willing to share her story. We do want all experiences highlighted so so all voices are heard!
Hello,
I’m so sorry that your daughter is in a similar position to one I was for years…
I’m very happy if she wants to reach out to me but also for you can I just say that never fear her reaction if you try to ask her about her illness and so say nothing.
Never let her eating disorder be the elephant in the room.
She might snap back at you or push you away but keep letting her know you are concerned, want to help and are there. I’m sure you do do that already but this is just for any concerned parents or loved ones of adult sufferers!
I hope your daughter finds her path through to recovery soon…
Helen x
Dear Helen. Thank you so much for sharing your thoughts and feelings as you recover. My daughter became ill with anorexia at 14 and her full recovery took about 8 years. Reading your reflections, I see the truth in all you say. My daughter was too young and immature to formulate and express these thoughts when she was ill, as so many sufferers are. I think that your insight will be so helpful to parents and caregivers now engaged in the battle for recovery for their loved ones. Thank you, thank you, thank you. I will keep you in my thoughts and prayers. You are a hero and your parents are definitely heroes, too!
Thank you so much for your lovely message.
I’m so pleased your daughter is now well and I’m sure you had years of huge difficulties… I think it is all the parents or care givers to those of us with an ED who are the heroes for sure!
Helen x
Helen, Thank you so much for sharing. Wish I was able to read this when my college sophomore daughter was in the throes. I may have been able to handle some bad moments better. I felt I was always second guessing myself. I also agree with the frustration regarding many medical providers when dealing with adult ED. We were fortunate to eventually find some very good doctors & a therapist that I could speak to ‘off the record’ when things were particularly scary. I am not sure if the ED is ever all the way gone & my daughter does not like to talk about it now. Things are so much better nearly 6 years later though we are all forever changed by the experience. There is always hope & there is life after ED. Never give up! Wishing you peace & joy.
Thank you Karen and great your daughter seems well now.
It also sounds like you got lucky in the end with treatment teams. I truly hope your daughter remains well and has a very happy future,
Helen x
Helen – your words are inspirational! Thank you for taking the time to write this, it is incredibly important for parents to know that their steadfast support and encouragement can help battle this awful disease. Cheers to you, for moving ahead on your recovery and being wise enough to seek your parents’ help on the journey.
I appreciate your comments, thank you.
Yes, help from loved ones and to feel less alone can be so vital in this isolating illness.
You parents are truly remarkable!
Helen
Helen, Thank you for writing and sharing. You are amazing, strong and brave. I see your strength and your power. You are doing hard work, as you know I understand it. I believe in you and I know you will fully heal.
Thank you.
You got me…
Thank you Hadley… you know friends who understand the illness like no one else are also vital in this recovery process too! X
What a meaningful and generous message to all of us! Thank you, Helen, for allowing us to see and to cheer for your family as you do this together. Inspirational and important!!!
Thank you so much Laura!
All your work has made such a difference to me in this illness and recovery now too so a big thank you for all you do,
Helen x
Hi Helen,
After listening to the tragic story of Sarah on Tabitha Farrars latest podcast yesterday it is so inspirational and bluntly honest to read your account on your road to recovery today. You have had to overcome many hurdles so far and there will be many ahead but when you truly reach the stage when ED can take no more you have come out fighting. Keep kicking and screaming and swearing (defo swearing) and get all of that emotion out rather than burying it within and feeling guilty.
My daughter has suffered with AN for 16 years and she too has reached that place. She too is a fighter (and swearer) . I will hold your words within my heart and they will give me inspiration to help my daughter in the way your parents have helped you. You are a very special person Helen. Keep fighting and never ever stop. You will get there and then you will be truly happy.
Thank you so much Steve for such kind words.
You are right that the swearing helps!’
I’m sorry that you know this illness so well too with your daughter but sounds like she is on the right path and she and I will come out fighting!
I’d heard of the devastating case of Sarah and every death from an eating disorder makes me more determined to help change the way treatment approaches in adult services are currently run….
Any death is avoidable.
Thank you again and you too keep strong and keep swearing with your daughter through this!
Helen
Thank you Helen for your insightful read. As the mom of a 13 yr old recently diagnosed, hospitalized, and discharged after two months of refeeding, I am grateful to get an inside version of what is going on. I’m equally saddened that you have this knowledge and believe strongly that your wisdom and strength is going to see you through this struggle finally. What you have identified is enormously helpful, it is what I’ve been told by her therapy team but it still helps to hear it from your perspective. I think I need to copy your words and read them every morning until it’s cemented in my brain. Bless you for sharing.
Thank you for this insight, how brave you are in every sense. I am trying to love my daughter back to health in every way I can and reading your words has been so reassuring and helpful, having been sent out of hospital with a list of foods and no real insight into how to make it happen, such advice as yours is invaluable. I so hope you are continuing to do well and send you every good wish for your continued recovery.
Hi Wendy,
It’s by chance I stumbled on your recent comment here, as I wrote this post over two years ago now.
I’m sorry to hear how abandoned you feel by the treatment teams with your daughter and hope you are making some progress. It’s a long road but every step matters.
I did do amazingly well in the end, thank you (as I never thought I would) and I’ve recently started a YouTube channel for people in recovery and their caregivers. It’s Helly Barnes Professional Coach (in case it’s helpful to you or your daughter).
Just keep loving her and reassuring her. For me, that’s what I needed most from my mum.
I am scared my daughter will have a heart attack, she is binging and purging, more than I realized. She is 27 and is seeking help, she has online groups and has her 1st in person appointment coming up. Should I tell her the truth on how I feel about her having a heart attack? I’m afraid to say or do anything to make it worse for her. She lives with me and I since lost my job, we are 2 weeks away from being homeless. This stress is killing us both. What should I do now?
Helen, thank you for sharing this several years ago. I am 41 and just started my recovery process after 2 decades of retriction and compulsive exercise. My body finally said enough. I am in the throws of recovery right now, about 5 months in and I am not dealing very well…I am divorced, alone, and fighting. My parents though, are also so so supportive, but they also cannot do this for me. I would love to know how you are doing now, and to be able to ask you more about your own experience “offline” would you be open to chatting? my email is included in the post I think.