Motherhood is a testament to strength, resilience, and boundless love. On this Mother’s Day, we honour the unwavering courage of mothers who navigate the complex and often heartbreaking journey of motherhood and eating disorders, whether that’s supporting a child through an eating disorder or supporting a family whilst experiencing an eating disorder themselves. We spoke to two mothers that had first-hand experience of Orri: a mother of a child going through ED recovery (Hereto referred to as ‘Joan’) and a mother going through an eating disorder herself while navigating the new territory of soon to be motherhood (hereto referred to as ‘Emily’).
Eating disorders affect millions around the world, but behind every statistic is a family with a story of love, resilience, and hope. By sharing experiences, we can break the stigma and support each other in the journey toward healing.
Joan’s Story.
Can you share when you first noticed that something wasn’t quite right with your child’s relationship with food or their well-being?
“I noticed the changes gradually – she was always a very intelligent child, with a fixation on patterns, from building Lego in stripes to organising books in height order. We just thought she was smart; we didn’t think it was any sign of anything more than that. She started to become very withdrawn and started to refuse sweets and snacks that you would expect a child to love. One day she brought home a workbook from school, and she’d labelled all the images of pizza/crisps/ice cream as unhealthy and refused to eat any of those foods going forward. She became obsessed with exercise, jumping on her trampoline for hours on end. Initially, the change was subtle – it was never really about completely cutting out food; she ate enough to get by, but not enough to grow and thrive and over time this deteriorated further.”
“She became obsessed with exercise, jumping on her trampoline for hours on end. Initially, the change was subtle – it was never really about completely cutting out food; she ate enough to get by, but not enough to grow and thrive and over time this deteriorated further.”
What was that experience like for you as a mother?
“As a parent, you carry a huge amount of stress and concern for your children – it’s unavoidable. But this illness impacts the whole family. There was an air of tension the whole time which you become desensitised to over time, but for friends and family that aren’t in it day to day, it was impossible for them to understand. I lost my mother around the time my child was diagnosed, so I didn’t have her to talk to, which was really isolating. It affects everything you do and inevitably this has a devastating impact on your entire family, particularly siblings. Logistically, it was difficult ensuring that one of us was always there for every meal and snack, this was a stressful and demanding part of every single day and left limited time for spending with our other child which is another worry. It was also very hard finding fun activities for the whole family that were sedentary and not too active (particularly hard with both my children being sport mad!). It was even challenging on holidays when we had to walk around endlessly to find a restaurant with something on the menu that was acceptable. It was hugely frustrating not understanding what was going through her head – at times she said it felt like the ED was her only friend, the only thing that understood her and that was heartbreaking. Dealing with an eating disorder within a family is one of those things in life that can either make you stronger or destroy your family unit. You must all remain united, consistent and resilient for an unlimited period, which is extremely demanding when working, raising your family, and trying to create a happy and relaxed home environment when the situation allows.”
What led you to seek support from Orri, and how did you feel at that point in your journey?
“So we didn’t speak to Orri until our daughter was in her 20s, we had managed to get by with support from CAMHS and Great Ormond Street and university support services until that point. Recovery is possible but is never linear, and relapses can occur. Unfortunately, during university she had another relapse, and even though we had always tried to make sure there was the least amount of disruption possible, given where she was with her health, she had to take a year out of university and come home. Accessibility of local NHS mental health services are massively under resourced and so typically were simply insufficient, however with the help of local services and us she was able to resume and complete her degree course. However, we were constantly searching for other services that might be better able to support her, always researching remote and online options when Orri came up. We were ecstatic about Orri’s approach to keeping people in their lives whilst going through recovery. And so, collectively we made the decision to do a 6-week course of daycare at Orri, going to the London office every day to give her the hands-on daily support that she needed and then transitioning to outpatient support. This gave us all the hope and strength to push on and keep going and Orri were massively helpful with supporting all of us through this stage when frankly we were at breaking point.”
“We were ecstatic about Orri’s approach to keeping people in their lives whilst going through recovery. And so, collectively we made the decision to do a 6-week course of daycare at Orri, going to the London office every day to give her the hands-on daily support that she needed and then transitioning to outpatient support.
What would you say to another mother who might be just beginning to navigate this journey with their child? What advice or comfort would you offer them?
“There are three things I would say:
1. Be kind to them and to yourselves. This is such a hard experience to go through for anyone but do try to lean on people around you for support. One day, I found a little book that was my grandma’s and it had a quote which said ‘Jesus didn’t promise you the road would be easy, he just promised to walk it with you’. So, we knew we just had to walk it with her, hold her hand and make sure she knew every single day that she was loved and was not alone.
2. Your person is still in there, and try not to lose sight of that as you can get them back. At times, it was so, so hard but we just had to keep believing that she was still in there. Through the tears and the fights, it was so important to remind ourselves that this wasn’t her, this was her illness, and we would get her back one day and we have.
3. Do not give up, and advocate for yourself and for your family. We worked through this for 15 years before we found Orri, and it’s vitally important to keep fighting for the right support for your child, you shouldn’t have to, but you do. We had wonderful therapists at Orri that reminded us that battling with this relentless illness for 15 years and not having had her medically admitted was a reflection that we had worked harder than people would ever understand, and it was so validating in that moment for someone to truly understand our experience –so I will always be grateful to Orri for that.”
Emily’s Story.
Can you share when you first realised you were struggling with an eating disorder and how do you think this affect your experience of motherhood?
“I’d had an eating disorder for about 10 years before coming to Orri; I was seeing a therapist at the time trying to deal with it and then I found out that I was pregnant, and I realised that this was about more than just me now. I had always wanted children, and I knew that I was done with letting my eating disorder rule my life and I didn’t want it to impact my experience of motherhood as it just wasn’t fair to me, and it wasn’t fair to my baby boy. This was such a huge step for me to take and I was scared at what this could mean but I knew I would do anything to make sure that I could experience motherhood properly and be healthy enough to bring my baby boy into this world. Plus, I was so sick and tired of the rules, the routine, the negative voices. It had already stolen enough moment of my life from me, and I didn’t want it to impact my baby’s life either. I think I was in denial about the severity of it for most of that time, but I knew how much space it eats up and if I wasn’t going to seek help at that moment then I was never going to be able to.”
I was so sick and tired of the rules, the routine, the negative voices. It had already stolen enough moment of my life from me, and I didn’t want it to impact my baby’s life either.
How did you find Orri, and how did Orri support you in your recovery?
“The therapist that I was seeing at the time encouraged me to reach out to the Service Director at Orri, as they suggested that I needed something intense to help me process my recovery and get in a healthy place before my baby boy arrived. There’s something very different about Orri compared to other eating disorder services. There is a real sense of hope as you enter the building, and this never seemed to disappear even in the most challenging moments. Orri showed me what it truly felt like to be held. Even on the hardest of days, they consistently made me feel safe and gave me ample space to explore and process my feelings and emotions. There was always somebody available to talk to one-to-one and you just knew you’d be met with kindness, respect and compassion as well as much encouragement to keep fighting. Orri was with me throughout my second and third trimester, up until birth, and it was amazing how the team wanted to understand my individual needs and goals from day one; they were clearly keen to provide the most bespoke treatment plan possible.
Subsequently, every element of my treatment felt individualised and at no point did I feel there was a blanket approach, even within groups and communal mealtimes. They couldn’t have responded to my needs and circumstances in any greater way.”
What does recovery mean to you now, both for yourself and as a mother?
“Recovery is such a long journey. But it allowed me to breastfeed, to sit down and do nothing but cuddle and bond with my baby. It has allowed me to be truly present for countless irreplaceable moments which pass by so very quickly. It meant I was able to enjoy his weaning journey and help him explore an array of different foods. It meant there were no limits on making new Mum friends – most playdates involve coffee and cake! I know the eating disorder would have done everything in its power to ensure such situations were avoided, regardless of the social impact on me and my little boy. It means I can take him swimming without being completely absorbed in my body image. Recovery allowed me to appreciate my body for carrying and birthing my little boy and I will be forever grateful for the opportunity to enjoy these moments with my family.”
What would you say to another mother who might be struggling with an eating disorder? What advice or comfort would you offer them about seeking help and holding onto hope?
“Recovery is possible if you accept it is going to be one of the hardest things you’ll ever do. It is undoubtedly painful but life on the other side is more rewarding than the eating disorder will ever allow you to see. Babies change and develop so quickly and I know that I would’ve missed so many of his little phases and special moments if I wasn’t in recovery because you’re not present when you’ve got an ED, your mind is elsewhere. Plus, children look up to us and mimic us I know he would’ve felt that more than anyone, especially with eating habits – I didn’t want him to be exposed to that. It’s not just about my life; it’s about his too.
If you are pregnant or you’re a mother with an eating disorder, I can’t express how much you jeopardise missing out on and what you’re putting at risk. I would encourage you to embrace the recovery journey and to remember that the quality of your life is closely linked to that of your child’s, especially in their early years. I appreciate how agonising recovery is, but I can also vouch for how magical, motherhood on the other side is.”
Recovery is possible if you accept it is going to be one of the hardest things you’ll ever do. It is undoubtedly painful but life on the other side is more rewarding than the eating disorder will ever allow you to see.
If you feel affected by what you’ve read and would like support, please don’t hesitate to get in touch. Find out more about our services here.
