By Maxine Hardy
One day our family life was amazing and one day it wasn’t.
One day my 15 year old bright, athletic, happy and energetic daughter was healthy, with the world at her fingertips, and then one day she wasn’t.
That day was so vivid in my mind…the horror of it. Knowing that yesterday she was living and that today she just wasn’t. The horror of knowing we could never go back to that life we loved and yearned for. The grief was just so overwhelming – I fought to get back to my old life so robustly. How did I allow this to happen? Who is to blame? Ok, someone tell me what I need to do and I will do it. Except that if I’d been told then exactly what I needed to do I would have perhaps stumbled at the first hurdle. The pit of despair would have been too much. There was certainly frustration about not knowing ED would roar into life when we systematically refed 3 meals and 3 snacks a day. It’s supposed to get better isn’t it – giving the patient medicine (food)? And oh, the endless appointments. I kept a diary which helped me reflect and evidence to my employer just what we had to deal with to keep our family together and alive and to keep being paid, despite not being able to work by adopting Life Stops Until You Eat. I needed everyone on board this sinking ship to help us plug the holes. And sure enough they came. I remember the gratitude I felt towards teachers, friends, my GP, family and even the joiner who fitted a lock on a downstairs cupboard and asked about this strange request. I made an excuse about it being a medicine cabinet…”a huge medicine cabinet” he joked and then realised that he’d pushed too much and quietly finished the job. Even him being there doing work in the house made me feel normal again, despite the reality of needing the cupboard to assist us in storing poisons and sharps to prevent suicide attempts.
We tried to get back to normal by holidaying (not sure it had the same meaning anymore!) and realised we were actually in a new normal with our 16/17 year old who still had hopes and dreams. ED told us it wanted to give up all the A grades and dreams of university to work at a gymnasium. We agreed to support her when the time came to make choices and if that was her dream then so be it. No point in arguing with illogical ED was my take on it. GCSEs came and went. A levels came and went. Thankfully aspirations of being a personal trainer (ED exercise driven of course) came and went.
There were moments in year 2 when I thought there was no way she could live independently away at university without falling back down the rabbit hole but hope was always that constant from day one. Hope kept us going and was our best friend. It never let us down, even when ED was stubborn or spewing hate.
The turning point was calling in at a service station after an appointment that overran and telling her to pick a snack to eat. The decision was too much and she couldn’t do it. Frustration got the better of me and I snapped “and that’s why I can’t see you starting university in September” The tears flowed and the anger followed but I was resolute – good decisions around self care needed to be plentiful before I could be confident in allowing her to fly the nest – with our support (financial or otherwise). Tensions between my husband and I widened the gaps forming in our previously impenetrable relationship. Accusations from both sides – he didn’t support me in reducing exercise properly…I was too alarmist and seeing danger everywhere etc. We had to be united to travel this path but it was so difficult to be on that same page.
We still had hope of full recovery and were all separately treading the same path and at some points stumbling off it. We needed to work together as a team to stay on the path. As scary as it seemed I needed to be prepared to let my husband lead from the front and on occasions my daughter too. As we walked through year 3 she started to walk in front and lead the way a lot more. She flourished being in front and we came to trust her confidence more.
She did start university- what a proud moment dropping her off there to start a new adventure. I suppressed all those anxieties and trusted I could respond to any issues. We were tested on one occasion early on but she got back on the path herself and showed us she was still leading the way.
Hope remained our friend and showed us just what our amazing girl is capable of. She successfully manages her own life, is happy; and more importantly, healthy.
Mantras have been so important to us for the family to keep reminding ourselves what is important: Food is medicine – Everything in moderation- All food is good – You can’t eat an elephant whole but you can if you take it in little chunks.
One day – I look forward to living one day at a time. I’m loving our new life!
Thank you for sharing this Maxine.
My daughter is 15 and we are in Y2 and one of my fears is about when she may want to leave home and go to Uni or live independently. Its so inspiring to hear your lovely girl has managed to be well enough to take this step. Some days when recovery is not going so well you need to hear stories of hope, like yours. My hope is that our girl will show us and that we will recognise when she is ready and well enough to do this. Once again shared experience is so helpful – your story chimes with me on so many levels. Thanks again. x
Yes I felt that time pressure as she got older and of course ED would tell me there was nothing I could do and she couldn’t wait to leave home etc. I focused on what we could do more – I could contact Safeguarding at uni and make them aware she was too unwell to attend…I could pull financial support…etc She wanted to succeed at uni so that leverage was huge. Good luck on your journey x
Thank you for sharing your story. Today has been one of those days when I’m feeling like hope is diminishing and reading your words helps me to know we have to keep going one day at a time and we will get there.
You’re very welcome. Even small steps forward are keeping you moving in the right direction no matter how slow. X
Thank you for this. I need to find hope and this helps.
Keep searching. Never give up x
Thank you Maxine for sharing your story. It is so refreshing to hear your daughter was able to manage on her own in college. We are on the same boat with our 17 year old. She has been battling Anorexia since the 7th grade and had been in the road to recovery until the pandemic hit. She relapsed las summer and she re-started treatment. She(the ED) has been very upset since then and has stopped communicating with us, her family nurse practitioner and her psychiatrist. Thankfully she still speaks to her therapist. She has been accepted to about 10 colleges and is counting down the days to leave her old world behind and starting over. As her mother, I am terrified and feel that feeling at the pit of my stomach. My husband feels she needs to own her journey start learning to live on her own. We hope she has learned enough these past 5 years that she will recognize when to ask for help should she need it. I let her know daily that I will always be here for her.
I always think failure is part of success and her having you as that safety net if she falters is amazing. Branching out and learning is super important for building resilience I feel. I was pleasantly surprised at just how well she did when starting university…I hope you will have a similar experience. Good luck xx
We are in week two and are still in high crisis. Reading this has brought up so many emotions in me; I feel grateful that someone understands exactly what we are going through, overwhelmed that the road seems so long, and terrified of failing at this. Like your daughter, mine is 15 almost 16, smart, talented, amazing, with a bright future, and then BAM! ED has turned our lives upside down. I feel like I have been made the lone captain of a ship, an unprepared captain who has had to take over the helm in a storm that I didn’t see coming and am learning to navigate in its midst.
Believe me I still get slightly emotional reflecting sometimes. It’s the hardest thing I ever did but something you are able to do, you just look at it and think you can’t. It’s amazing what we are capable of. We trained ourselves to live in the moment and resist looking too far ahead. There is certainly no failure in our journey. We may have similar journeys but each of us experiences a unique journey too. We as parents go through overwhelming emotions ourselves – I liken it to the stages of grief. Sometimes we can get stuck in it ourselves if we don’t take care of ourselves. Carer burnout is real so we need to put the oxygen mask on first. The support from parents here kept me afloat. You are not alone xx
When I say there is no failure in our journey I mean in general…no failure only feedback. You will learn the most from these times. I stopped fearing ‘blips’ as we always learned something from them. X
Thank you for sharing. We are in the same boat. The ED is so strong in my 15 yo AN/Restrictor pretty simultaneously with the start of the pandemic. We are on 4th therapist, and the only one who has agreed to do an in person session. We have been on the waiting list for a residential treatment facility since November 2020.
I’m sending you care and best wishes. Remember ‘food is medicine.’ X
Thank you so very much.
We are also in week 2 of PHP treatment (at ERC) for our 15 year old daughter. The diagnosis was recent (Feb of this year), and we are hoping that we caught this early enough to really treat it. I just wanted to let you know that I could feel your analogy…that is exactly what every day feels like. I have spent most of today meeting and emailing with her clinical team. But this too will get easier as it becomes more mechanical. We will get through this mama.
❤️❤️ Yes, this too will pass. It will get better. 100% is possible ❤️❤️
Maxine – thank you for taking the time to share. My wife and I got out daughter back this past year after 4 years of fighting ED. All of what you shared mimics what we experienced and then some. One night we had to place a camera with a motion sensor in the hallway because we were afraid our daughter might try to run away or hurt someone else in the family. At one point we seriously considered that maybe she was possessed?? COVID was actually a blessing in disguise for us and something that our daughter has even acknowledged on her own. Being home from school, we were able to monitor all meals and the pressure of dances, athletics, etc was now off the table. I was the bad cop for most of the journey and just a few months ago, I heard “I love you” from her for the first time in four years. Her personality has changed 100% . . .she is back . . . thank you God! what made the difference was getting to and remaining above her goal weight (which seemed high but obviously was not), taking a low dose anti-anxiety med (we never wanted to use meds but agreed to try the lowest dose and it helped), finding a therapist she could better identify with and removal of all pressures from school and being able to see everything she was eating. Hold onto hope!!
I’m so happy you feel that way. Definitely hold on to hope! I remember the first genuine hug…so lovely hearing those words for you I’m sure. Meds are just as useful a support as therapists. I wish you continued strength. Xx
Thanks for sharing your world – mine feels impossible at the moment, we are just starting on the ‘recovery’ path, but the pushback is so strong, so much anger & hate coming from our beautiful girl. We are about to start some medication for the anxiety. I hope we can win. I just don’t know how I will get her to eat tomorrow 😓. I also feel like my girl is possessed.
You will find a way. Your girl is listening to all the encouragement and love you are showering on her even though she’s locked within and her voice has been stolen from her by the unwelcome lodger that is making her behave so out of character.
Food is the medicine that will get her through this terrible time. Compassion in abundance towards you, from you, is what will give you the strength to help you through this journey. Xx
I find it hard to shower with love. I feel guilty that I am just not that person. I am just pissed off. We lost her dad 12 years ago when she was 3 to cancer, she doesn’t really remember, but I am just pissed the fuck off ALL the time. Really? twice in 10 years dealing with a life-challenging issue while working as an essential worker in a pretty darn hard job. I ust don’t want to, yet I know I must, I am swept up in it. I don’t have the tenderness left unfortunately. Every hospital stay she comes back worse. Just worse. It’s hard to find the hope.
Dear Donna these challenges can leave us depleted with not a lot left to give. Please don’t be too hard on yourself. Carer burnout is so very real. I turned to my GP to support me through the worst of it with medication and counselling. It gave me time for me and helped me to ‘feel normal’ again. Sometimes we also get stuck. Stuck in that horrid cycle of grief. Sending care and best wishes your way x
Thank you for sharing your story. Our daughter is a junior and I have the same fears about college. We are still eating 3 meals and one snack a day and worry that we won’t make enough progress to help her be prepared for that step – which she desperately wants! We were making pretty good progress when Covid hit so we are having to double down again before she can start to even eat alone without someone watching. I needed this bit of hope today!
Hi Victoria
In the January before the start of university (in Sept of that same year) my D became more motivated than ever to recover as she knew my thoughts on her going away and that I would not allow her to start. She sought EMDR therapy and that kickstarted her to practice real self care. We also had a contract in place so that she could remind herself about making good choices. It was touch and go right up to starting but she flourished. I have no reservations about her returning after the Easter break now lockdown measures are being lifted. I hope things go well for you! Xx
Maxine- thank you for sharing your story. I stumbled on this FEAST website recently as I frantically searched for answers, guidance, hope and am so grateful it offers things like this blog. Three weeks ago we learned of my 17 year old daughter’s anorexia – so many thoughts of why didn’t we see this sooner? how did it get this bad? where did I go wrong? where do we turn for help? The panic is subsiding as I learn more and as I read about experiences like those posted here. Wow is this big and scary, exhausting. But there is hope.
Hi Kate
You are not alone and really sadly it is a well trodden path by those families before us. FEAST’s wonderful parents and up to date knowledge saved my Ds life and our family from drowning. I’m so pleased you stumbled this way! Yes I have had those same thoughts and questions however it serves no purpose as this illness was always out of our control and therefore it makes no sense to berate ourselves for not doing something. Let’s hope that future families can protect themselves from EDs with future advances in medicine research. Stay hopeful xx
Kate –
I know that I needed to hear this recently: You are enough. You are doing a good job!
I can’t say that I am out of panic mode yet, but the path is getting clearer as we step into treatment. And I don’t feel so alone when I know I can reach out to her clinical team to ask if she’s progressing, are they experiencing the same food behaviors that we are, is what we are going through normal?
But you are not alone.
❤️❤️❤️ none of us are alone. We are all supporting each other albeit virtually.
Maxine, thank you for sharing your beautiful and inspirational story! My family is going through the same experience with our beloved daughter. Reading your post gives us hope, inspiration, and determination. My daughter will finish her inpatient treatment soon, I really hope that she will come out of this ok, although I know this may take years for her overcome this mentally and physically. She keeps weighing herself multiple times a day thinking that she is gaining too much, I am worried she will keep doing that when she goes home from the hospital. Could you, or anyone, please kindly share with me your children’s post-treatment behaviors? What would you do in this case?
Being a parent and just like all of you here, I am desperate to save my kid and to bring her back to her old self. I would deeply appreciate any tips/resources/stories and your experiences on how you have dealt and overcome ED with your children. My contact is phuonganhnv01@gmail.com. Thank you!
Dear ANH, hope is so powerful and I wish you strength on your journey. It may be helpful for you to engage on the FEAST forum where you can start a conversation and hear from experienced carers with lived experience.
We used Eva MUSBY’s YouTube and ebook resources to aid us on the recovery path. I replied heavily on the fantastic parents on the ATDT forum here. You can ask specific questions around your issues at a particular time…there is so much support there. X
Dear ANH
You are most welcome and hope is so important to grasp on to.
Have you thought about starting a thread on the FEAST forum? That way you can not only read up on others experiences but get direct responses from parents who have lived experience.
Slowly working all eradicating all ED behaviours is the key to staying healthy.
We used Eva MUSBY’s YouTube and ebook resources to help us get on the recovery path but then also stay on it with the support of the fantastic support of the forum parents.
Each journey is unique but you have come to the right place for support. I wish you the very best. X
Apologies for 2 responses – I thought I’d lost the first one!!
Hi Maxine,
No worries and thank you so much for your kind response; I appreciate your thoughts and introduction to the FEAST Forum! It has been challenging for our family so I am eager to learn from everyone’s experience and opinion.
Thank you again for your inspirational words!
Anh