By Isabella Sumsion
When I first contacted FEAST, I thought I was going to use this opportunity to write down the details of my eight-year battle with anorexia and orthorexia. But I soon realised that sadly, you have probably heard the replicates of my story over and over. Instead, I am going to use the next few paragraphs to tell you what I wish someone had told my parents, and that might mean that someone else’s battle doesn’t last as long as mine had to.
From personal experience, I can only speak about anorexia, orthorexia and bulimia; but I hope that in general, most of this content will be applicable to all forms of eating disorders.
THE TIME IS NOW…
Ever heard the phrase it’s better to be safe than sorry? When it comes to eating disorders, the saying couldn’t be more appropriate. If you have a child who has given you any reason to consider that they may have an eating disorder, it’s time to take action. Don’t wait till they’ve lost a scary amount of weight, till they are so sick that there is no doubt. If you turn out to be wrong, you can be happy, but with 1.25 million people in the UK having an eating disorder, affecting younger and younger people, I’d take the risk of being wrong. Because if you’re right, acting fast could save someone years of their life. Nine out of ten times it will be aggressively denied. The disorder will probably do a very good job of convincing you that you are being paranoid, that it’s a question of just getting a bit healthier, they just really love celery, are eating loads at school, or whatever else the eating disorder can conjure up to throw you off the scent.
But if there is nothing wrong, then there is nothing to hide, right? And there would be no reason to be scared of seeing a professional. There comes a point when an eating disorder has completely taken someone hostage, that hospitalization is the only option, and the window for home treatment has closed. This is not the time for hanging around–please don’t wait until it’s too late.
THE EATING DISORDER IS NOT YOUR CHILD
Eating disorders are complicated. It’s as though there’s a third, uninvited, person in your relationship, piggy in the middle. Deciphering what is the eating disorder talking and what is your child can be tricky, not only for you, but for the sufferer too! It is crucial from the outset to make a clear distinction and know that the eating disorder is a separate entity to your child. The eating disorder uses our voices to scream and our bodies to kick, but know that the eating disorder is one thing and your child another. This helps to explain three important concepts:
1. BEING BAD COP
When it comes to food, eating, cooking, exercising, meal planning, calorie counting, weighing (the list is long) and all things that the disorder wants to control, you have to be bad cop. No negotiations or compromises. Everyone’s watched a blockbuster movie where the police “don’t negotiate with the terrorist” in a hostage situation.
Well in this situation, the hostage is your child, the eating disorder is the terrorist, and the best thing you can do, no matter how hard, is to stay strong, strict, not-budging and not to negotiate.
*A word from the wise, for some people it might be helpful to be told that “this is your eating disorder talking”, for some people it’s the most frustrating thing in the whole world, feeling like nobody is listening to how you are feeling. So sometimes thinking it but not saying it is the best course of action. Personally, I think that the phrase is more helpful for the parent or carer, than for the sufferer. If all it took for someone to recover was to be that it’s their eating disorder talking, you wouldn’t be reading this post today.
2. BE SUSPICIOUS
Eating disorders are clever. They are sneaky, manipulative, and dishonest. Don’t trust them. Unfortunately, this means you can’t trust your child, when they absolutely promise that they ate earlier, they won’t do star-jumps in their room when their alone, that they will stick to their meal plan at school and not throw their lunch in the bin. There is no battle too small for anorexia to want to win, no feat too tiny to be considered a triumph for the disorder. I remember in hospital my eating disorder telling me the best thing I could do was hide bits of food between my gums and my lips, under my nails and in my pockets. Telling me I had won as I sat there with cheeks puffed like a hamster, with greasy fingers and dressing gown pockets full of soggy bran flakes… and that was after I had admitted I was ill and convinced myself and everyone else that I was determined to get better. That’s the thing about eating disorders, even if you desperately want to be better, and have a normal life, you are so gripped by the disorder that it can take five rides on the recovery/relapse roller coaster before being able to finally accept that you will have to give up all of the eating disorder. So, if someone has told you they want to get better, it’s not smooth rolling from there on and you need to be vigilant, to be able to catch them when they tumble; and, as severe as it sounds, scare them back on track when the inevitable hiccups come along.
3. BE PREPARED TO BE HATED
The eating disorder is NOT going to give up without a fight. Screaming, shouting, crying, saying horrible, horrible things, guilt tripping, begging… every trick in the book will be used. One of my biggest regrets to this day is the awful way anorexia made me treat my parents. But all I can say is that as far as possible try to remember that this is the eating disorder and not your child. It will be tough, but if you can keep a guard up and not let the words hurt you, you can stay strong, it will be worth it in the end in terms of full recovery. Because if the eating disorder hates you, you are doing something right.
When it comes to these difficult confrontational situations, it can be useful to be the nurse, not the nurturer. If it were your job to be looking after a patient, you would have distance and not the emotional attachment that comes with being a parent. It can be helpful to adopt the mind-set that eating disorder related stuff is kept in a box, and you don’t let stuff out of that box invade other parts of your life and damage your relationships. Be united. Anorexia forced a divide between me and my mum. I spoke only to my dad, letting only him cook for me, and the disorder pushed my mum away.
My relationship with my mum has taken longer to heal than my relationship with food and my body. Do everything in your power not to let that happen.
Present a strong united front to the eating disorder, one united army is the strongest. Outside of eating, do things together that nourish your relationship. Find things you love doing together, that let you laugh and bond and love each other. Whether its crosswords, an addictive TV series, jigsaws, reading together, anything – find something to bring you together when the eating disorder is trying to drive you apart.
CHORES HAVE TO BE DONE
After many failed attempts at recovery, only to be pulled back under, the way I finally ate my way free, was to take on the ‘job’ of eating. Perfectionism and high achievement are incredibly common in eating disorder sufferers. I had to flip eating from the emotional realm, to a chore that had to be ‘achieved’ and ticked off my to-do list. That’s the thing about perfectionists, we love a to-do list.
Typically, the disorder will use this trait to push someone to the brink, but you can use the same trait against the eating disorder. At the start of recovery, eating wasn’t for pleasure. It was a chore that had to be done, like homework. To-do lists, weekly plans, goal sheets, whatever works, use it.
A prescribed ‘medication’ meal plan from my therapist gave me permission to eat and feel like I was doing the right thing. I found this a really helpful approach to kick-start my recovery. Whatever form was easiest to get energy in, that was how it happened, as long as it meant I got the job done. Sometimes that meant 5 spoons of peanut butter, or a blended fat packed smoothie, as long as the calories were going in.
This is by no means a sustainable way to live, but was for me an effective initial step in restoring some of the damage to my body and feeding my brain, allowing me to see things a little clearer and loosen anorexia’s grip slightly. Slowly but surely, little by little, I increased my energy intake, my menu variety, my weight, and ultimately my happiness. After 7 eating disorder controlled years and 4 inpatient admissions, it took a year of ticking off those chores, even when I had given-up hope and it felt like the hardest thing in the world, from my first meeting with my private therapist to where I am now. Weight restored, happy and a food lover!
Which leads to my final thing I have to say. Never, ever, ever, EVER give up hope.
If you’re struggling or you are watching someone struggling, it can seem like things will never change, that you’re stuck in a nightmare and there’s no way out. I spent most of that final year of recovery doubting myself, feeling like what I was aiming for was impossible, and that I would be stuck in limbo forever (my therapist and parents can vouch for the countless times I phoned them crying and saying that it was impossible).
You will have heard this before – it’s not a smooth ride. There will be bumps in the roads, ups and downs, and probably a lot more downs. But never settle for limbo, never think this is okay, we can survive here. Merely existing is not living. And living is what life is for!
After 4 inpatient admissions, 2 mental act detentions, force-feeding, and 14 different psychiatrists, my adult specialist team discharged me because they didn’t see me making progress to warrant further help. My psychiatrist told me I would still be anorexic at 40. And my exhausted family couldn’t challenge me anymore.
But they didn’t give up. My dad got in touch with a private eating disorder specialist. With the help of this incredible woman, and a lot of determination on mine and my family’s part, we proved the doubters wrong. We WON. The trophy? A full recovery, and a chance to live my life to the fullest.
It takes strength, determination, courage, hard work, professionals, family and friends, and it’s probably the hardest thing you will ever have to do, but I can promise with all my heart, recovery is worth every tear, argument and hard day.
It is possible, but if my family had given up hope, if my therapist didn’t have confidence, I wouldn’t be writing this today, wanting to finish editing so that I can eat pizza with my family and laugh till my stomach hurts.
Isabella, as a parent of a young woman now in recovery, thank you for taking the time to share this time in your life with so many. As the parent, I cannot tell you how many times we were told to give up, walk away, get on with our lives. The public at large would see us as crazy people who were fixated on our daughter. We knew differently and so it was a long, slow slog for all of us. She is in full recovery now and we never, ever believed anything other than that for her.
Your words will give another family strength to move through one more day and one more day and one more….
Thank you!
A grateful parent
Thank you Lisa this means so much, I am so glad that your family got through this difficult time, thank you for your kind words, Isabella
Thank you for this inspiring post! You are now the angel sitting on my shoulder saying, “hang in there! You will get there!” It must have been a scary and lonely time for you and your parents when the health care providers gave up.
What a beautiful post! Thank you for sharing your experiences and for sending this message to families. It’s such an important one.
I wish I myself had done more of putting emotions and feelings in a box. What a horrible ride we were/are on. What an inspiration you are to many. I wish more education was given during adolescence years then maybe so many wouldn’t struggle. I wish you well as we continue on my daughters recovery…. btw who is an absolutely amazing young woman.
Isabella, your piece is a testament to hope, perseverance, bravery and determination. I enjoyed it so much and shared it with my daughter and other parents that need to read your piece to keep their hope alive.
Enjoy your life to the fullest. You earn it!
Thank you so much for this post. I have had a very tough week with my daughter who is only a few weeks in to recovery and reading this post has given me so much hope. I wish you all the very best.
So many thanks Isabella, for sharing this. It is so helpful to get an insight into how this terrible illness feels from “the other side” and your and your parents bravery is really inspiring.
Congratulations on winning that trophy!! A Huge Thank you to you Isabella for your courage,advice and inspiration to us all. Attending the FEAST conference this past weekend inspired me to ask more questions to the psychologist who is working with my Precious daughter who is in her 5th year battling anorexia. Unfortunately there are professionals out there who don’t seem to know how to deal with this illness.
Thank You Isabella, for sharing your journey . I wish I had had it to read 7
Years ago when they first diagnosed our daughter. Your post gives me hope and after the last six months of multiple treatment centers and levels of care , Hope is hard to find . I wish I knew the name of the therapist who helped you . I am losing faith in ED treatment facilities.
Enjoy your wonderful life , you deserve it.
Powerful stuff. As a parent that was so real. I’m glad to say I managed what you advocate but ED might put youngsters through nightmares but being a parent was hell. So I would add that parents must must self care through this, and if necessary seek your own help. I resorted to over a year of psychotherapy to help me and us through the worst times, and it was enormously helpful to deal with the parental guilt, the stress and trauma of being ‘hated’ screamed and spat at. It was valuable to manage my fear/worry/ scrap to remain the bad cop the task master and give me strength to do the right things and keep a sense of perspective on things whilst keeping my daughter alive and sadly having to do battle with lack of healthcare or to make system work for her. So yes great article and lovely it led to better times on both our parts. The only caveat for parents is that the there is a little PTSD about life after, worries linger long and it is a challenge after, I think there is a hangover of being that person that stepped outside being just a mum that stays. But I am happy to be whatever mum, cos she’s healthy.
Dear Isabella
Thank you for sharing your experience. My daughter is 5 years in, currently in hospital, has had countless admissions since the age of 13. It has fully tested my husband and my relationship, we unite to fight but it has been cruel to him. We won’t give up hope but I think there is still a long tough ordeal ahead. She’s afraid of coming home. I’m exhausted and afraid. But I will take the hope that you offer and hope that she too will live to enjoy life again when it is not a daily battle to survive.
Willing you on…
Vanessa
Thank you! We’re only 7 months into my daughter’s illness, and I was one who wondered if I was being silly suggesting she see her doctor as she’d only been restrictive eating for about 2 months … but her heart rate told us the truth and the anorexia had seized control. Her recovery has begun, and I will hold tight to your words of advice and not give up!
Thank you for this post , I’m on tear reading because it’s been so hard , as a mother I told my D I will fight to my last breath but my health and my husband are overwhelmed more than I thought , please stay well you are an inspiration to keep fighting the ED and getting better one day , I hope no too late…will you considere to write a book or give speeches for the kids and families going through all this hard process ?
Dear Isabella,
Thank you so much for posting above – so much resonated. I am so heartened and pleased by you now being in recovery. May I ask, if possible to answer , what percentage this was due to the final private specialist you saw? Was this a cumulative process – ie was it successful due to the previous positives you had accrued both from professionals and parents of course? Have you had any related/unrelated mental health challenges since you are in recovery or, hopefully!, is everything else positive too. I ask this last question as specifically our daughter can often display other negative coping mechanisms whilst in relative recovery versus her battle with eating disorder. I understand these are personal questions after you’ve already opened up so much but if you are able to reply in a private way most appreciated. Irrespective to first answers, may I ask the name of the private specialist your Dad found please?
Thank you for sharing your story, it definitely gives us hope. Can you provide the name of your amazing therapist?
We thought she was in adult inpatient intensive treatment for the month of Apr, but on Day 10 she refused to finish a dice-sized bit of burnt pasta, 4 options (eat it; drink meal replacement; feeding-tube, irrational fear; or discharge). Moving those goal posts, anxiety, “she” chose discharge.
We thought she saw her community GP on a regular basis, and she reportedly made appointments and never cancelled or missed, until May (after intensive treatment discharge) but then she left without making another appointment. We thought she was with outpatient programs—weekly meal support and a discussion group, but she stopped in Sep in order to do prerequisite college courses for OT. We thought she was seeing her private therapist each week, but in Mar she told her she was taking a break for financial reasons and to focus on a course. We thought she saw the dietitian each week, who later told us progress wasn’t evident and in Apr pattern was, she made appointments and cancelled several times.
In Jul my husband was alarmed and called the therapist, who said confidentiality means I can’t help, and outpatient clinic, who said the same—but our daughter said she had an appointment there Friday, and if the clinic felt inpatient for emergency care was needed, she was prepared, feeding-tube is hard, but to save her life. She was admitted on Fri, she said. No visitors, she said.
Phoning, texting, we got our fill—we’d been visitors on other admissions, so we knew their routine, but I missed Scrabble. I refrained from burdening her with, “I miss you. I’m lonely. Are you lonely? I went for a walk, or a swim.” She wouldn’t benefit from hearing that. Worked, stayed busy, encouraged by recovery happening across town. Stayed busy 8 weeks of recovery (fiction). One pass, for a drive, which was strained. I didn’t reflect, but usually when she was in inpatient she lost the irritability, but not this time.
“I don’t understand, you look just the same.” “Phase two begins when there is another bed.”
One of my daughter’s supporters said, “If I was talking, I was lying.” 14 years and recovery in intensive treatment worked before, but I think after her last recovery it felt like, act normal and it will be normal. We let it go too long, we didn’t see, stayed busy, refused to see. Didn’t consult, relied on one source for info. Wanted to believe. It is Jun. In Oct it will be a year.
The work is the same each time but don’t give up and don’t rely on a compromised sufferer to know, their needs don’t match their wants. They need you to act—stronger than the anorexia, a team, on the same page. Family support works and there is no better way.
Thank you for sharing. This has been so helpful and encouraging to me and my family
Thank you for sharing this incredible story of recovery. Congratulations seems too trivial a word.
I so appreciate your time and your truth. Congratulations on winning-living !
Yes, you have battled and won!
Our adult daughter battled in her late teens and won. However, I doubt now that ED ever let go of her. Twenty five years later her husband and we, her parents, are searching for the right help. There are only dead ends. We plead with you for the therapist name and contact.
We are desperate, yet will keep hope alive. Thanks for your encouragement and strength.
Isabella, HOPE is real, HOPE for each day that comes, for each day that our daughter wakes to recover. Thank you for your willingness to share, inform, inspire and offer HOPE. We were just led to this site on Thursday and it has offered us tools that we haven’t gotten due to all the COVI restrictions. She leaves for residential care we HOPE by Friday. We were so ignorant when I first started to document what I was seeing she was eating. But we will not let ignorance rule out recovery now. HOPE will survive Knowledge is power and that is so very evident right now. Please offer more that has contributed to your recovery success. Family strengthen by faith, builds are HOPE. You sharing adds success to HOPE!!! Thank you. All stay well , live and HOPE…with gratitude to you
Thank you for this post of hope. Isabella, can I ask you one question? If my hospitalized daughter is so mad at me for refusing to take her home that she no longer lets me come visit (and she is in a room isolated from most of the other patients and lonely and bored) should I just go anyway? I am beginning to think I should. (Okay this is only the second day, but I’m wondering) Thank you!
Thank you, Isabella, for sharing so openly and honestly. I took a page of notes I hope to look at for reminders as we’re going into week 16 and still fighting. Nothing about this is easy, so your post helps tremendously.
Thank you for this, Isabella. Just what I needed to read today after a tough morning of being the bad cop and actually wondering if I was over-reacting to my daughter’s ED behavior. The ED can be so convincing. Stay strong and thank you for sharing your story.
Thank you for your post Congrats on your achievement. I will share your story to my kids as one is so lost and says nothing helps.
Congratulations on your hard work! Thank you so very much for sharing this. I needed to read this as I deal with the grips of this disease in my child. Thanks for reminding me to fight!
Isabella, your words and story mean so much, I’m so grateful for the people around us helping with my daughter, we could not manage without these angels, we have good and bad days, its really hard being the bad cop at meal times, but I know I need to, its a fine line knowing how much you can push. The health of your child is the most important thing in the world. Its only been a few months for us so far, and its been the biggest scary learning curve. When S was first diagnosed our world started crumbling, but I know now without a shadow of a doubt we will get through this as a family, and come out even stronger.
God bless
Mike
Dear Isabella, my daughter has been diagnosed with anorexia very recently. I am unable to find competent medical professionals. Could you please share the contact details of your private therapist? My email: natalya.chumachenko@gmail.com. Thank you.
Thank u SO MUCH for sharing! Could you send me contact info for your private therapist?
Thank you for this, I needed to read this today. I hope you’re well!
Early stages of recovery here with my daughter and I hope for an ending as happy as this one.
Please can you let me have your therapist’s name to help my 16 years old daughter?
Thank you for your inspirational post. My 15-year old daughter is shutting me out & im finding it tough to cope with being the target of her anger. Your post & story give me hope.
Thank you for sharing your story. My 9-year-old son was just recently diagnosed with anorexia. It’s so hard to see his behavior and his mood swings, and I celebrate when I see glimpses of his happy, joyful self. He is currently in the hospital undergoing physical recovery and will be headed to a treatment clinic after his discharge. Al the signs were there and I couldn’t see them, I refused to see them because I didn’t want to see them. I didn’t want to believe it. I appreciate you sharing the first tip about separating the eating disorder from my child. I literally said to my husband before reading this post that our son is not his eating disorder, and how important it is to distinguish the ED voice from his True Self. Reading this gave me hope.
You did nothing wrong. NOTHING. You’re suffering from what in the pysch world is called ‘hindsight bias’ – thinking you should have known something that was impossible to know at the time. No parent knows the extent to which their child is struggling until it hits the point where it can’t be hidden anymore. This is a sneaky, evil affliction. It intentionally and skillfully hid itself from you – and did so until it couldn’t hide anymore. You did nothing wrong! I could type that a hundred times.
It’s a long road. We’re about two years in and I feel like we’re just getting started with our daughter. So, give yourself a break – literally an figuratively. Forgive yourself. Take time for yourself. Swap out with your husband when you’re burning out. (Same goes for him.) But none of this is your fault.
Thank you so much for sharing this. My young adult has just started treatment. Your story and your insights are SO helpful. You have given me a lot of hope, and your practical advice and tips will be invaluable. I am not going to give up. The Eating Disorder is not going to beat my family.
Just curious Isabella…do you have a website..your story seems worthy of helping others via Instagram or Facebook.