Editor’s Note: Ricarda is woman from Germany who has recovered from anorexia and uses her experience to help parents of people with eating disorders. She sent this post to us in order to share her personal perspective in the hopes that it will give insight to parents. It may be helpful to read this post as well about the role of motivation in recovery.
Having followed the blog posts for a couple of weeks now, I cannot help noticing that what generally seems to concern parents the most is the question of calories per day taken in by their child. Although that is certainly understandable, especially when the child’s weight is dangerously low, I would like to broaden the perspective a little by sharing with you my point of view as an ex-eating-disordered person, coach and future therapist.
I suffered from anorexia for more than a decade and it took me almost another 5 years to really leave it behind me. By that, I mean, leaving it behind as if I had never had any trouble with food in the first place. I was once only an inch away from suicide and the fact that I have overcome the disorder is the most important achievement of my life.
I can only imagine that being confronted with such a diagnosis as a parent is overwhelming; and as anorexia has such complex layers, such a complicated logic and such a dynamic of its own, it’s very understandable that parents usually don’t have a clue what to do and where to find appropriate treatment for their child. It’s especially hard knowing it may take the affected person years of self-reflection in order to learn how to put into words what they are experiencing.
It takes hours to properly explain what anorexia is about and how it works. There is no short version, but there is one important realization, at least in my experience: Being thin is only the tip of the iceberg, just this small part of the iceberg that’s visible to the eye. What often lies underneath is a low self-esteem, no self-love at all, social insecurities, the inability to take responsibility for one’s own life, the lack of a fully developed identity in the sense of knowing who you are and what values and principles to live by, the clinging to extremely high standards, the inability to deal with failure/ rejection/ uncertainty/ criticism or literally any intense negative emotion, especially being hurt, sad or angry. And the list goes on.
The message I’d like to communicate is, that in order to get healthy, many skills need to be learned. And from whom? From you, the parents, the ones who spend the most time with their children.
However, being able to provide those teachings to your child also requires that you fully understand what is going on and which messages can be accepted by your child. Surely you have noticed that often words meant as a compliment are twisted around. Every lesson has its time and place. I would like to encourage you to maintain a strong and confidential relationship with your child, so that he/she will share at home what has been learned in therapy. What comes up may be shocking to you. It might even include criticism of you as a parent. Whether or not that is justified does not matter. It’s rather proof of a great relationship between the two of you, if your child who suffers with anorexia dares to question you and shares his/her deepest insights with you.
Last but not least, I would also like to encourage you to embrace the fact (at least what I believe is a fact) that the ultimate decision to live (and therefore eat) lies with your child, and with him/her alone. I don’t write that to scare you off or discourage you, but to yet make another important point: you need your child to WANT to get healthy, to make a conscious decision and consciously create his/her life of choice. Although you cannot make that decision for him/her, you can motivate your child to pick the right choice. This motivation lies, again, within a profound understanding of the disorder and its functioning. The disorder is both your child’s ruthless torturer AND his/her best friend. Cruel, but reliable. You need him/her to pick a leap of “faith in a better future” above a stable friendship that might include some suffering but at least provides feelings of strength and certainty.
May you never lose hope and may your child’s journey back to health be as short as possible.
Thank you Ricarda for sharing your story and perspective. I share your experience of the importance of parents supporting their children in building skills and resilience, develop their sense of self and build a life worth living.
My experience as a mum has been that I could not rely on my child’s motivation to eat when she was seriously ill. I had to require her to eat. Her thinking improved with nutrition and time. My perspective has been that the type of support needed has changed over the course of her illness, nutritional state, recovery and with age.
But I have found that a reliance on my child’s motivation to eat has been a barrier to recovery. And my understanding of the evidence is that fast nutritional rehabilitation leads to better recovery.
Although I can relate to a lot of what you say, I feel anxious about the danger of focussing on motivation. Nutritional rehabilitation is a bloody business- extremely distressing for the individual and the family. But it is necessary for recovery, and needs to happen one way or the other, even if the child is not motivated (true for most).
Dear Lara, Thank you for replying to my post.
Just to make sure: I didn’t mean to encourage parents to drop it all and rely on the will of the child, but rather to strengthen it and to include such topics as mentioned in my post into the daily conversations and build those skills, parallel to keeping a healthy weight. I am aware, that some persons, who have read my post, are not yet there cause the danger of death is imminent.
Making someone eat can be as difficult as making someone sleep. When it comes to such basic needs as sleep, food, water, going to the loo,… we are all masters of our own bodies. Yes, when someone is not able to take care of oneself – of course, every possible measure must be taken to help that person. On the long run, though, getting to that point where a decision of the person suffering is made, is critical.
I wonder what specifically worked with your daughter when you required her to eat. I’d be grateful for more information.
Are you giving a workshop? My daughter is somewhat suicidal…has been anorexic for 15 years..31 now.
Thank you Ricarda for taking the time to write this blog. I know that it will be helpful to many.
I think that the Power and responsibilities of parents depends on a large number of variables. It depends on the nature and severity of the illness, the ability of the patient to engage with treatment (and the patient’s age and maturity which will be a big factor in this) the treatment options available to patients and their families and a whole host of other things.
Where I live in the UK some form of family based treatment is the recommended form of treatment for adolescents. In my somewhat jaded opinion the actual treatment offered is often very underpowered and resources available to both patient and family (and, indeed to the clinicians involved) are inadequate, but the basis of the treatment is evidence based. Parents are given full 24/7 responsibility for restoring the full physical and mental health of their child. Full dietary restoration of health is a vital first step. I would prefer it if there was much more back up both for families attempting to assist their children, and for patients who often seem suddenly to have full responsibility for their health dumped on them at the ago of 18 and wish there was MUCH more medical care for all patients as well as therapy, motivational work and a host of other things.
Dear Marcella, thank you for having taken the time to comment on my post. Yes, I definitely agree with you, that the actual treatment offered is often very underpowered. And I can see now, in hindsight, that my post probably didn’t quite offer, what parents are mostly looking for: specific, evidence based paths to explore further. I’ll keep that in mind for future posts.
Also, I don’t doubt that FBT is very useful for some patients (though I also must say: if my parents had tried to control me in the way FBT suggests, I would have gone berserk and my parents would have lost my trust). I believe, that age, personality and the time of duration of the disorder are very influential factors. I’m curious, what your opinion might be in this. So, my intention was not to plant doubts, but rather to point out, that what lies beyond the questions of weight should not be forgotten.
I do think it is important to look at all this from many lenses. My daughter (or rather her ED) did go berserk and it did not trust me. That lasted for about 4 months until her weight was restored and then she moved into gratitude (which did sometimes mix with ambivalence as she was in her late teens). She and I both believe that a relatively short period of turmoil was well worth it for an abbreviated stay in “anorexia land.” Lest you think she was not strong-willed or emotionally dysregulated, we actually required law enforcement back up early on. I share because I think that lived experience perspective from someone who did have hard core FBT as a late teen matters as well. It is wonderful that you got there! Recovery for all is the goal for sure.
Thank you Ricarda. It took me months to get to the point as a parent that I agree with you. The disorder has underlying causes. We are working on those now that our girl’s weight is restored.
Dear Peter, I’m so happy for you. It’s really great that you have managed to get her that far!
What has helped me in the past to learn how to deal with negative emotions and release pressure is EFT (emotional freedom technique). I have done that for about 4 years now and will probably never stop again. I have also found a study about it called “Applying Emotion-Focused Therapy to Work With the “Anorexic Voice” by Rebecca Hibbs et al. I plan on wrtiting a post about it some time soon in order to include some scientifical insights, if the study resonates with me.
Thank you for painting this rich picture of our children’s minds — so much going on, so much they need support with and yes, how precious it is when we have a connection that supports them when they are in such hell.
Just one bit where I disagree with you, so I will explain for the sake of parents here who might be at the early stages of treatment: when you write “you need your child to WANT to get healthy” I believe that is a view not borne by many parents in the field, and not required by therapists trained in a family-based approach, at least for anorexia/atypical anorexia.
Indeed it is a huge relief that our children can get well even though for a long time, the illness may feel genuinely ‘right’ to them (egosyntonic), many have no desire to get healthy, and indeed they may not be able to sense that there is anything seriously wrong (anosognosia).
For those wanting to read some more and then reflect on what makes sense for their child, there are the FEAST family guides on this site (https://www.feast-ed.org/family-guide-series/), and I also find therapist Dr Sarah Ravin’s piece very usefl: “The role of insight” http://blog.drsarahravin.com/eating-disorders/after-weight-restoration-the-role-of-insight/
Everything else you wrote here is, I think, very precious: that as parents we remember that our children are human beings with a whole lot of emotions, not just a body, not just a container for food and weight!
Dear Eva, thank you so much for replying to my post. I believe, we have a common german friend. He had offered to get in touch with you, but I wanted to read your book first. 😉
I’m always very intrigued by stories about anosognosia, as they usually contradict my personal experience and have always done so. Over the past 15 years, I have always asked persons suffering from an ED: when did you realize, that you were actually ill? My fellow patients at the clinic, where I received treatment, a woman leading a support group in my hometown, a fellow student at the university who is still very deep in the vortex of the desease, … all replied the same: they knew pretty soon. They might not have had a name for it, nor did I at the time, but they knew that they had somehow left that area called “normal”, although (and that might be, where the impression of anosognosia might come from) they didn’t want to admit it because that would have required them to actually face their problems and fight them. I must admit that the amount of persons “interviewed” by me (let it be 20 or 30 people in total) who have all been reflecting that experience unisono is not large enough to come to any conclusion. Also, as I am not yet a therapist working with suffering ones myself, I must trust, that such phenomenons exist, although my personal experience was different in many ways.
When I followed the link to Dr. Ravin’s blog and read it thoroughly, I also wondered: when insight is required at some point to “own oneself’s recovery”, as she writes, wouldn’t that help to maybe shorten the duration of the disorder? I sometimes get the feeling, that because we know that the disorder can be chronic and usually takes over a decade to get rid off, we accept that fact too easily. Please get me right: I’m not pleading for a specific point here. I just wonder: couldn’t insight be the key in an early state as well or is insight something that can only be learned as a late-teen or adult? Aren’t especially the minds of children flexible, curious and equipped with a vivid imagination? Are we refraining from helping them explore the depths of their soul because we want them to keep their innocent childhood as long as possible and if so: isn’t going through a hell such as anorexia evidence enough for at least a certain degree of maturity? I know, I might have let myself gotten carried away by highly philosophical questions, but I hope you find them interesting, inspiring and maybe even constructive nevertheless.
I’ll be back in touch through your website soon. 😉
As an Australian and parent of a beloved daughter tortured by anorexia for more than 3 years I absolutely agree with Marcella and Ricarda.
The daily battle to save our girl has excoriated our family, her sister relationships and almost destroyed our parental relationship with her. Regaining her trust has become priority number 1 after the treatment regimes of refeeding, hospitalisations, family based therapy, fast nutritional uptake, meal plans and tube feeding has lead us to all the cliff-edge of exhaustion, desperation and despair. Though there is evidence for nutritional uptake allowing recovery to start it is largely limited in its test groups to younger adolescents. Young adults and especially those suffering with atypical anorexia have very little evidence to support this approach.
Ricarda you have compassionately expressed what we now feel to be true for our girl – at this point in her battle, we must walk with her but not control her – doing so only enables anorexia to draw her closer and push us away.
We must be ever-loving but also limit what hold anorexia has on the rest of us which means we will not have our all girls lives controlled and dictated to by the limits anorexia imposes on one of our girls.
We have saved her life and will continue to do so everyday we can, and she knows that we are ready, but she has asked of us to respect her dignity and personhood and quit making us all bow down to her battle.
Growing up is especially hard for an anorexic – the illness itself seems to infantilise them or lock these pale, starving beings into a twilight world of not quite adulthood, a perpetual locked in a tower story-book character.
I wonder how much is driven by anxiety and a fear of growing up, of self-Individuation and not knowing how to step forwards. In that sense anorexia provides comfort and safety.
Dealing with these complex underlying drivers seems equally as fundamental to recovery as nutrition though I fully acknowledge the role nutrition plays in assisting functional thinking.
How to get there is not a clear straight path however.
Having clinicians and research that supports multiple pathways to enable recovery is vital for securing a future life for all those that suffer from this hell on earth of a disease.
Dear Emma, wow, I am really impressed by your reply. I couldn’t have put it in better words and I can read your empathy in every line.
Personally, anxiety and fear of growing up, self-individuation and not knowing how to step forward have been THE drivers of mistreating myself. When I grew up and was mobbed at school by other kids for either knowing words such as “accustically”, for expressing joy or just out of boredom, I learned that it is not safe to be me at all. The way I was as person obviously got everybody around me quite a lot to pick on. I, obviously, was wrong. I
t took me years to learn, that it was not at all my fault. And that I may have not only an opinion independant from others, but even an opposite one and that this doesn’t make me one bit less lovable. I have only recently learned to embrace my “light” as a person. Shining bright has always been dangerous as it draws attention and people might find fault in what I do or what I say. Yet, embracing my light, my skills, my strenghts, my successes – even in a humble way – is the essence of self-individuation. I still risk to “chicken out” from time to time, though. Only now I take a time out by watching Netflix instead of refusing meals.
I wish you and your daughter well! I hope you can look back with pride from time to time and realize how far you’ve already come.
While I agree with some of what has been written, and while it might be true for the author’s experience, this cannot be generalized to everyone’s experience. This part especially struck a cord for me: “I would also like to encourage you to embrace the fact (at least what I believe is a fact) that the ultimate decision to live (and therefore eat) lies with your child, and with him/her alone” (first of all, more genders exist than the binary of “him/her”, and while something related can be a part of what I am going to say, that’s the main point). Sometimes perpetuating/maintenance factors of anorexia and other EDs are actually outside of the person with the ED’s control. Sometimes marginalizations and oppressions (and sometimes multiple of those) in society mean that basic needs cannot even be met, never mind there actually being any adequate treatments and supports available. Things like being a gender minority, being disabled/chronically ill (oftentimes multiply), being neurodivergent (such as Autistic), living in poverty (sometimes deeply so), being racialized, Indigenous, etc can so deeply hammer someone down and not having any adequate support, or any support period, available, can make recovery from an eating disorder nearly impossible. The decision to live is not fully within the individual’s hands, when systems—both government and society, which ultimately overlap—do not help to lift the individual up to a level of thriving, and basic survival seems, and can be, impossible at times. If people’s basic needs cannot even be met, and there’s a constant struggle for that, and people have to constantly just fight to have one’s existence acknowledged, recovery from an eating disorder can be incredibly difficult and almost seem impossible (of course it still *can* be possible, but the odds can be quite slim, no pun intended). So no, the ultimate decision to live and eat and recover are not all in the individual’s hands alone. Recovery can actually be a privilege that some have, while others do not.
And all this *ON TOP* of the challenges the eating disorder poses, some of which have been touched upon by the author as well as some of the other commenters
Thank you for having taken the time to reply to my post and thank you also for providing another perspective.
Of course, what I have lived through and what therefore formed by point of view cannot be generalized and I am willing to learn from and listen to other people’s experiences.
I understand, that my rather provocative phrase that struck a cord for you, as you put it, is difficult to accept and in order to prevent any misunderstandings I would like to refer to a metaphor I have used in the reply to another comment above: making someone want to live, making someone want to eat is as impossible as to make someone fall asleep. How can you make someone do something that this person does not want and is fighting actively against? E.g. by pretending to sleep, when they are not – meaning pretending to eat, when they are not. Of course, you can try to make someone do something. Parents even must try.
But ultimately, when all has been said, when every therapy has been tried, when each and every detail of the past has been explored and understood, when the weight is back to normal and the life still waits for you outside while your inside is still occupied by depressive, hateful thoughts, then there is one last thing to do: decide. Whether and how (with or without anorexia) one wants to live. Of course, I deeply and sincerely hope that anyone suffering from Anorexia will get out early enough to not have to face such an existential question. I was lucky enough to become aware of that question about 3 months before I had planned to go, to leave that hell of a life behind. What had raised that questions for me, really was a coincidence. But once that question had appeared, it wouldn’t let go and I understood, that I had to answer it, that noone could answer for me and that if I chose to live, this would mark only the beginning of the fight against anorexia. Mind you: after 10 years of therapy.
This is what I meant with “you need your child to WANT to get healthy”. I myself had relied for over a decade that some therapist would miraculously free me. That anyone would finally be able to save me. What saved me in the end was the revelation, that I had to own my life in the same way that I was prepared to own my death.
Yes, there are things happening in life, that we have no control over. Horrible things, traumatizing things even. I know. I am aware. And no, we cannot prevent them from happening, nor can we decide how or when they hit us. But: we always have a choice of how we respond.
Do we choose to numb ourselves with alcohol, drugs, pharmaceuticals or – occasionally in my case: excessive Netflix-sessions – or do we show ourselves the same empathy and compassion and (self-)care, that we would show a dear friend? When our mere existence is not acknowledged (by whom?), do we not still have a choice to either fight for it (and risk to loose), accept that we won’t get what we want and choose to surround ourselves with other people? I am aware, that as I don’t know your specific situation, these words might seem harsh or rude to you. But I write them with love and hope in my heart.
Is it fair, that some people suffer from society more than others and have additional burdens to carry? No. Is it just? No. Should society and the government change? Yes, of course. I would be happy to live in a world full of mutual support, mutual respect, mutual kindness,… . But is it impossible to leave anorexia behind because of it? No. Does it take more strength than others have to muster up? Probably. And is that fair? Definitely not.
For years, I hold on to anorexia as the finger of judgement that points to society and sais: look at me, this is your fault, this is what you have made me do to myself. I did that in regards to my former schoolmates, who had mobbed me at school which was the main reasons why I got anorectic in the first place. For me, getting healthy again was equal to releasing them from their guilt (which they weren’t even aware of). Until, one day, about 5 years ago, I learned that there’s a difference between guilt and responsibility. They were still guilty of the mobbing. But I took responsibility for my life and how I wanted to live it and react to the challenges I have to face. That was the day, my last demons vanished. And they haven’t been back ever since.
I know that maybe some of the parents here have a daughter or a son (or whatever sex the child identifies with) who is close to death or even died. As approximately 10% of anorectic persons choose suicide, a conversation about this should not be excluded. So when I say “embrace the fact, that the ultimate decision lies with your child”, I am actually hoping that some of the parents might feel relieved. To make sure, I’m not misunderstood: I do not say “Do not care”, “Look the other way”, “Let your child work it out all alone” or any of that. On the contrary: I say “fight”, “help”, “Do what you can to support”, “Inform yourself”, “Learn about anorexia and especially the booby traps”,… And at the same time, be aware that it is not your own life but the life of your loved one and you can only help carry the burden to a certain point but never take it on completely.
Thank you once again for sharing your perspective and please know: I whish you all the best from the buttom of my heart.
One more important part as a maintenance factor for AN and EDs that takes away the power from the individual to decide to normalize eating and “recover” is trauma and it’s impacts on the individual, and how it impacts everyone differently and everybody’s traumas are different. There needs to be so much more support for the person with the ED other than just standard ED therapies and treatments because it is not all just about wanting to be “thin” and “pretty”. It can be so much more than just about body image alone, and for some, it’s not even about body image. The whole person needs to be seen and have their needs met, and again, if basic needs for survival, let alone just standard health matters that can be tended to in a traditional healthcare setting, can’t even be met, how can one even recover from an ED? While it may be possible for some, they are quite possibly the exception.
Thank you for sharing your very personal experiences as someone with Lived Experience and coming from the other side of what we see as parents.
From my perspective while I hear and recognise what you are saying, my experiences with my own daughter was in line with what has been said above concerning the will in wanting to recover. It took nutritional restoration for her poor brain to start functioning again to be able to take on board tools to assist with anxiety, body dysmorphia etc and for her thought processes to change.
As a former rural ambulance officer I recognised that many of her personality and behaviours emulated traumatic brain injury – but in her caused by malnutrition rather than blunt trauma.
I do hear you when you say someone has to want to recover and I saw the light in my daughter’s eyes change from a certain point, but, it took lots of supported meals, and a combination of weight restoration body and brain repair, distractions, things to look forward to and strong but loving boundaries for her to be able to reach a point in which the behaviours made way to normalcy.
When my d relapsed due to over a month long bout of severe illness – again I noticed a direct relationship between the sudden rapid weightloss and the sudden changes in her behaviours. So while I agree the focus shouldn’t be on weight and number (which plays havoc in my daughter’s extreme OCD in this ‘state’) this really is part of the journey to recovery for her and others I’m aware of, but should be well and truly kept in the background and treated as any other obs as a metric only.
Concentrating on supporting her through to a good cognitive ‘State not Weight’ approach saw the light come back into her eyes, literally like a switch turning from off to on, and her love of life, friends and activities return.
Again, everyone has their own journey – much kudos to you 💜
Dear Sarah, yes, I fully agree. The weight plays an important role. I never doubted that. My intention was only to broaden the perspective, not to change it. Thank you for replying. I have learned a lot through your post.
I had not been aware of the consequences of hunger on the ability to e.g. have a longer conversation until very recently, when another student at university suffering from anorexia literally didn’t manage to concentrate enough
for that. Your comparison with the connection between behavior and brain injuries made that (and what others here posted, too,) more comprehensible for me. Thank you.
I am glad FEAST is a place of multiple perspectives and I think in time we will see how much the thinking of professionals and society influences us. I am a mother who dragged her daughter kicking and screaming from a sudden, severe onset of anorexia to fully weight restored and living her best life in a relatively short time. Her motivation became a factor only after she was physically well, mentally much better, and understood that to proceed with the life she was motivated to have (uni in particular), she had to keep her weight up, period. It’s important parents don’t mistake ED’s mistrust for their child’s mistrust, etc. In our case, we were blessed with the clinical guidance to implement Life Stops Until You Eat (and recover)—advice I have had many other clinicians say ranged from misguided to abusive. Our end result is a young woman who dates her recovery as 1 year from the date she was diagnosed, and 16 months from when anorexia got its grips into her, and only led a circumscribed life for a short time. We all want exactly the same thing —less suffering and more recovery —and how we get there is absolutely impacted by timing and resources. I am glad you got there!
JD Ouellette – I’d love you to share some experience of what ‘Life stops until you eat’ meant for you with an older teen. My daughter is nearly 17 and previously very independent and outgoing, living in London. Anorexia hit suddenly and unexpectedly last October. She lost a lot of weight quickly (13kgs in 3 weeks), since then we have muddled along and with a great deal of our effort and restriction on her, more or less maintained her weight, but the Anorexia thinking is stronger than ever in her head and we are ‘stuck’. She is extremely slim but not yet dangerously underweight (49kgs @ 178cms). She lives on a highly calorie controlled diet of about 1,400 a day, I just cannot get compliance for anything more than this and it does seem to maintain her much of the time but she isn’t getting over her Anorexia mentally at all. I am on taking short term pain to get her back to eating a normal amount, with the hope that her Anorexia thinking recedes if she eats more, so she can go to University and get on with her life (which of course she really wants but can’t translate that into action). How much freedom did you take away and how, to force weight recovery?
I won’t lie, this post alarms me. As the mother of a child that developed AN at the age of 11, and that is in currently in steady recovery, I can tell you she had absolutely no “underlying conflicts”, which she absolutely agrees with. I know that this is the reason why it didn’t take us long to get her on the path of recovery: I quickly realized that everything I had learned as clinical psychologist was wrong, and what actually saved her life was refeeding her.
In my work as a clinical psychologist, I observe that there are people that, at the same time they have an ED, DO have self-esteem issues, body dissatisfaction, trauma, family conflict, etc., and the ED quickly becomes enmeshed with all of these. So it makes sense that a person with these experiences would strongly identify with your perspective, and that FBT will not cut it for them.
I believe that agreeing that there is a genetic/biological/metabolic predisposition is a must in our field (ED professionals). This way, we can understand that there different triggers for different people, but without a brain predisposed to developing an anorexia nervosa, you will never develop it. Losing weight triggers the brain, but there may be several reasons a person loses weight. Such a long conversation to have. Thank you for your post, Ricarda