The rest of the story

Here's the real story of anorexia. It usually starts in late childhood or adolescence. It is usually worrying to family and friends but they don't know what to do and the person's brain doesn't allow  him or herself to feel ill or ill enough. Various interventions are attempted and rebuffed. At times the ill person does seek help but it fails them because it is dependent on insight and motivation.

Some pass through this time and for a variety of reasons survive and pass out of it.

Others - many - live lives of only slightly visible misery for 15-20 years or so and then die. In their late 20s or early 30s their illness kills them by infection or heart failure or suicide: they give out. Meanwhile they often accomplish great things in their studies, in their work, in helping others before they die but their own internal lives have been isolated and wretched. Their families live in a state of constant alarm broken up by despair and anger and, over and over, hope.

These are the stories that I hear daily from families. Ill people who because of law and custom must be treated as adults exercising free will and end up living in a back bedroom of terrified and exhausted parents or in apartments alone. Half lives spent being looked down on in health clubs, stared at as they run at all hours in the street, tense family events or absent from themjust not attended.

If your loved one has an eating disorder and you are tiptoeing, hoping, wheedling, sulking, just trying to keep things from getting worse: please consider that you're not trying to make today better. You are trying to prevent decades of horrific barely visible hell and a lonely death decades early.

If you are making decisions based on the next meal, the next hospitalization, the next insight - if you think that being a good person, successful in work, and able to follow the news means they are well enough - if you think they'll start getting better once they've graduated, got that job, moved away... think again.

This is the outcome you are trying to prevent:

Children's doctor tortured by anorexia died


  1. Yes, a thousand times yes.

    "If your loved one has an eating disorder and you are tiptoeing, hoping, wheedling, sulking, just trying to keep things from getting worse: please consider that you're not trying to make today better. You are trying to prevent decades of horrific barely visible hell and a lonely death decades early."a

    Get help for your loved one now!

  2. PS - I'm sitting here still thinking about this terrible news and of the quality of life this young accomplished woman must have endured these last few months prior to her untimely death. What keeps coming back to me is the fact that she was a doctor. She was a member of the medical profession. If this fact alone does not tell the world, especially the medical/psychiatric profession, the legislators, the health insurance companies, etc., etc. that if this disease cannot even be fought by a doctor, a knowledgeable person about the effects of cachexia, then why do people still have their heads in the sand about the importance of extended and extensive treatment early on. About the effects of starvation on the brain. About anosognosia. My own state doesn't even legally recognize eating disorders even though NIMH on the national level does. One needs to emphasize something OTHER than eating disorders - another mental illness - in order to obtain treatment. This is wrong. Things must change.

  3. Thanks for this, Laura. There are many things I don't agree with you about, but one thing I wholeheartedly agree with is your views on what constitutes recovery (and that "good enough" is not the correct answer), and the need to strive aggressively if need be for a full and complete recovery. If I had recovered completely the first time around, age 7-8, it might have been 1-2 years lost from my life, rather than 18 (so far). I think many people in my life would be shocked/disbelieving to know how deeply it runs, even when I am in the "normal" BMI band. I have a degree, a professional job, my own flat, a cat, friends, hobbies, do volunteer work, etc... And people assume one can't have those things and be ill at the same time.

    Last time I was seriously unwell (aged 22) I took myself first to my own doctor and then to a therapist - at my own cost because the doctor would not give me a referral. Both the doctor and the therapist deemed that I had not relapsed, because my BMI was around 17.5 and I was still managing to work full time + volunteer jobs. I don't think it helped that I had come from work to both appointments and thus was wearing a suit, and also that I was articulate about the problem (i.e. probably seemed relatively rational), plus there was the fact that I was there voluntarily (the first this had happened EVER in the history of my anorexia). I was turned away and told to "try to eat more", despite confessing that I was not sleeping or eating, had a history of anorexia, and was experiencing a lot of anxiety. Of course, things escalated and three months later (feeling validated by the doctor's response), I had had a full-blown relapse and the mental symptoms had worsened to an extent where I was of course refusing to see any medical professionals or get any help. It made me angry and upset to know that I had tried to get help but because I looked/seemed too "together", I wasn't able to get it.

    Anyway, very sorry for the long ramble, just wanted to say that this post is bang-on. And also, that case in the Daily Mail story is absolutely tragic. My thoughts go out to her family. I know I'm doing a lot better at the moment, but sometimes I am terrified that that could be me.

  4. Being in the position where my son is now considered an "adult" and in charge of his own life and treatment, this post and report are even more relevant. Also relevant is the fact that I may just be "tiptoeing" around, worried about pushing for those final kilos when all around me - my son and his treatment team - are telling me he is "fine as he is". The twilight rather than the full-on sunshine, with the far higher risk of relapse that "good enough" can bring, especially with university on the horizon.

    Thank you for this, Laura. xx

  5. This upset me a lot :( I wasn't having a good day yesterday anyhow, but when I read of this woman's tragic (yet outwardly successful) life, it reminded me so much of my own experiences. For many years I was very underweight with very active AN. Yet, I held down a responsible job and gained many academic qualifications.

    But was this purely due to anosognosia/lack of insight? Actually not completely. I had profound anosognosia as a child/teen with AN, but by the time I reached my late 20s/early 30s I knew I was sick. I couldn't ignore the osteoporosis, heart problems etc. The problem I actually had was in finding effective treatment - and doctors writing me off as 'chronic', which gave me no hope. It was greatly unhelpful for me to be sent to therapists who reeled off guff about culture, body image and pressures on women to look good; or suggestions that I had 'chosen' AN. And then there was the question of finance. To engage properly with treatment made it impossible for me to work, yet I had a mortgage, bills to pay etc. I did well academically not because I was 'driven', but because I enjoyed studying and was encouraged to do so. My psychiatrist has described low weight AN as 'the elephant in the room'. Everyone can see it, but often no-one dares to intervene.

    Hindsight is a wonderful thing and I am very grateful that I eventually obtained effective treatment for AN.

  6. Laura --thank you for sharing your anger and outrage over the death of this young woman. These are treatable illnesses and no one should die from them! Your anger inspires me today to be stronger in the fight to pass FREED, to not quiet my call to others to ACT with sense of urgency in the face of these diseases.

    Thank you for inspiring me again today.

  7. I realize that the underlying story was about a young woman with anorexia but could this have been applied to any type of ED as well as anorexia? I'm trying to convince significant family members that our loved one who suffers from BN/EDNOS, depending on how active her behaviors are at the time, needs more support from us, specifically in terms of ordered eating. While she is definitely more functional than she used to be (school and work part-time), her eating is nothing even close to normalized (snacking, grazing, binging, rarely sitting down to a real meal and certainly not getting a balanced diet) and she has no social life at all. Yet her father thinks it is "good enough" because she is no longer depressed and non-functioning and because he doesn't want to rock the boat. What if I let this go on? At 20 she isn't likely to "grow out of it." No, she won't die as the young woman in this article died. But will she ever really live?

  8. I personally believe this applies for the full spectrum of eating disorders. There are those who believe anorexia nervosa is qualitatively and quantitatively distinct, but the jury is still out.

    I completely empathize with a parent who thinks that better is enough and that rocking the boat just makes things worse but I'll be frank: I think that stance makes us part of the problem. I believe the goal is to live entirely free of the eating disorder and in good mental health generally. I think the patient often can't see that until they are recovered, and it is up to loved ones to "do the thinking for both of us" for a while, or at the very least not let "ED" do the thinking for us.

    Please let your husband know that death rates for BN/EDNOS are believed to be as high as for AN - although they are often not put on the death certificate that way. BN and EDNOS are very, very serious psychiatric conditions and they are TREATABLE. We must, as parents, do what we can to make sure our loved ones get effective care in any way we can and not be in any way part of the reason they do not.

  9. dear laura,
    after 15 years of treatment and enough insight to sort of know what kind of miserable life it is but unable to cross that bridge into action. And since it's not that hard to balance in the physical presentation of appearing there are no red flags yet that same space compromises every ounce of logic in the brain. resulting is existence becoming excruciating painful...... this illness is a beast. what a sad space when even the idea of death is a relief.

    The 30 something year old suffering in silence says whatever you want to call it - call it. please keep speaking out.

  10. Anonymous,

    Not being able to cross that bridge is, in my observation, an expected symptom of your illness. It isn't your fault or a lack of insight or will in my opinion. You are suffering in silence and your suffering matters. Is there someone in your life - family or friends or community resources or clinicians - who can "do the thinking for you" for a while? Can you put yourself in the care of someone?

    There is a life free of the eating disorder there for you. It is all right if you have others to carry you over to it, and once out there you can be part of helping others, if you like. The insights you have gained will be of use to you there - and to others. You deserve it. If we were talking about a stranger sitting next to you on a bus - someone also trapped in silent misery who you knew could be well and living freely - what would you want for them? (Sometimes it helps to get out of the trap of thinking it through in our own case - and feel the compassion and hope for someone else as a proxy)

    All living people have an investment in life - and have wonders and mysteries to explore in a well life. It is not your fault, and letting others be that bridge is not only brave, it is DOABLE.


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