Its not about the wanting

I’ve been observing a conversation between parents online about how to cope with adult sufferers of eating disorders and various co-morbid conditions – about how to keep pushing for recovery when you are the only one fighting and about when to lovingly detach for your own survival.

Let me perfectly clear: I am not judging these parents. I completely understand where they are coming from, why they feel the way they do, and I offer them and their families my most sincere compassion. Moreover I think it is an incredibly important discussion to be having and one that too often gets swept under the rug because it is sad and uncomfortable and scary. No one deserves to have their reality swept under the rug because it is not a story others want to hear. The truth about eating disorders and mental illness in general is that even the very best treatments we have will not work for everyone. We can throw everything we have at these illnesses and some people will stay sick and some people will die and we need to able to talk about this.

What I do find striking (and upsetting if I’m being honest) is the way in which this discussion is being framed around words like “wanting, “willing”, and “non-compliant.” Its not about the wanting. Or the willing. Its about the strength of the illness. No one – and I mean absolutely no one – wants to live in the hell of an eating disorder or other psychiatric illness. Being too scared to change, not believing that change is possible, or believing that the process of change will destroy you – none of these things are equal to desiring the status quo. You are not waiting for your loved one to want recovery enough to overcome the illnesses. You are waiting for the illness to loosen its grip just enough for your loved one to access the part of them that already wants recovery. And sometimes refeeding and weight restoration accomplishes that. Sometimes it takes meds and therapy too. And sometimes we don’t have the tools to make that happen for a particular person.

I don’t always love the analogy of ED as an abusive partner but in this instance I think it is a helpful comparison. People stay in abusive relationships for lots of reasons even when they have people offering to help them leave. But no one wants to be abused and I think (hope) that we all recognize that. It hard to keep that in mind with ED and other mental illnesses because the sufferer is the only one who can see and hear their abuser. But that does not make it less real.

So even in discussions of chronicity and hopelessness and frustration and the need to detach from the sufferer I think it would benefit us all to remember that its really really really not about the wanting.


6 thoughts on “Its not about the wanting

  1. Laura Collins says:

    Your title says it all: hauntingly so. I am watching the same conversations and have the same concerns.

    I think we all agree that parents do all we CAN. But this doesn’t mean our efforts will be successful. Many of us find we’ve done all that can be done, it isn’t “working,” and we have to accept that. And accepting our boundaries involves loss. It involves grief.

    That is painful for others to watch. They will often, especially if they have just stumbled on the situation, offer ideas and suggestions that have already been tried or aren’t appropriate. Can’t blame them, but it does add pain. And for them, it can be confronting to see that their OWN efforts may not be successful and that they, too, may face the same decisions. So be it.

    Many of my friends are dealing with situations where the boundaries of what they can DO have been exceeded. Appropriate boundaries mean they have to stop doing. As you say, they do not lack wanting. Their commitment and love and willingness are no less and in fact having been so terribly tried is heroic and beautiful. These friends often, out of kindness to those not in their situation, withdraw from the larger community out of concern of being a downer, or out of feeling misunderstood. I wish this was not so. Our parent community cannot afford to be only about supporting those who are in good situations. The community needs, and is needed by, the full range of realities.

    There are boundaries, though, of course. Suicidality and aggression against patients can and do happen and need to be seen for what they are: an emergency. A treatable emergency. No one can argue that the extremity of caring for and loving a chronically ill loved one pushes a parent to the edge: it does. As fellow carers I think we have to treat that with gravity.

    I think we also have a responsibility to make our communities and conversations about boundaries. We have to keep saying to parents to do what they can without implying that it will work, or that growing along with their kids is good caregiving. We need to support boundaries in caregiving — support one another in finding our unique line between supporting and enabling, caring and burning out, accepting and letting go.

    I agree with what you have written so well before: about giving up. I don’t use that term because newer carers misinterpret it — I call it boundaries. Do what you CAN, and know when to stop.

    Frankly, what I see for some parents has to do with their fear that no matter what they do it will not be enough. And this may be true. Not all patients can be reached. Not their fault. Not ours. Maybe we should separate those parents whose hope is essential to daily support from those for whom hope must be tempered with acceptance. I still believe we are better staying together. But that means discomfort for all involved, necessary discomfort. I still think that is better.

    Thank you for talking about this. We all need to.

  2. Helen Missen says:

    What a wonderful, insightful article. Thank you.

    As a parent we wish for the life that has been interrupted, we hope for an ED free future.

    The ‘wanting’ of the vice like grip to let go long enough to recover from AN is what my 21 year old daughter daily fights for.
    Does she fail? No, resoundingly I cry no!
    Each day, as I do, she awakes with hope. Some days that hope kick starts and energises, other days are not so brave.

    Laura’s reply is, as always, wise. Though uncomfortable to hear. I have by choice, removed myself from the ‘bosom’ of the crowd. I often wonder why, though cannot return.

    The catapult into the oblivion of not being ‘Successful’, that this highly competitive illness (with the obvious genetic connections of equally success driven parents) seems somehow to request perfection from parents too. There does seem to be a lack of boundaries, a lack of genuine empathy from those that have indeed trodden the same path, and may have emerged victorious in the race to well-ness.
    The judgement from within the fold is harsher than from the outside.

    Perhaps I shouldn’t be surprised though, the continuum for some blighted with these illnesses, is disregarded by the very people supposedly standing alongside and apparently empowering to continue.

    The fact that my daughter remains in the twilight zone, not quite emerging, even though I (and she) have done everything the handbook recommends, that ‘works’ for the majority, the ed remains resolute in its battle cry and stronghold. That her team can say to her face ‘you have more insight into this illness than most, and more resolution to fight than many’, does not compensate that she slips from ‘success’, or encounters fierce battle from within.

    Should we then be preparing people for an occasional longevity. Perhaps due to the fact that there does appear to be a spectrum for AN?

    On first meeting my daughter her favourite Maudsley based therapist exclaimed, as only she can: ‘I’m here to give you the tools to keep yourself well’, talk about motivational! Not you’ve got to fight, not you’ve got to eat, rather here are the tools you need to fight, live and laugh in the face of the adversity that you are faced with.

    I’m rambling, but thank you for highlighting the problem!

    • Jen Haken says:

      Helen, you have summed up exactly how I feel! My 23 year old daughter is in a similar position to yours. Thank you for saying what I wanted to!

      And thank you, the author of this article, for an enlightening post.

  3. aramblingbecky says:

    I wrote a similar post to this in February, about the wanting and waiting for someone to be ready. I find it difficult to hear people talk about how someone needs to want to recover because that isn’t how it is. Sometimes people talk as if it’s a choice, as if we could magically choose to recover but we are making a decision not to do so… Why? Because we like to feel this way? Because we like to watch the people we love worry and fret? What is it that causes some people to think we are making that decision, choosing to stay unwell? It really makes me sad to think that people who I know, who I think a lot of, could believe that this is a decision that I am making… Also, when you have absolutely no hope and everything feels impossible, there needs to be a voice saying otherwise. When you’re written off as chronic, as ‘perhaps this is as good as it gets’ because ‘maybe you have to accept this is who you are’…

    Early intervention is completely and utterly vital, but for those of us who weren’t lucky enough, and some who still won’t have the option due to service structure, don’t give up on the ‘chronic’ ones… Please.

  4. Lisa Guimont says:

    As the mother who had to lovingly detach when my daughter became an adult and chose to leave home rather than be subjected to any more treatment, and I say this with so much love in my heart for her, the only thing I could do was to let her know every single day that I love her and that at any given moment, if the ed let go enough for her to whisper “mom, I need you” nothing on this planet would stop me from being at her side.

    I admit, that like Helen, there have been times I have been afraid to share my story for some may only choose to see me as a failure as a parent. How on earth could I not have saved my child from the illness? How could I not possibly have done more? Why didn’t I do just one more thing? Truth be told, we did everything we could humanly do AND it wasn’t enough to help her fully. I do believe however that from the time of diagnosis at 17 until today, she, through us and through others has been given the tools to do the battle or to “keep herself well” and I believe with all my heart that one day, she will be free. Until then I will lovingly cheer her on with each new day, each new accomplished task at fighting back, each new step forward and I will console her when she feels she’s fallen down and offer help to stand back up again.

    I knew then and I know now that it isn’t about wanting, she wants to be free, more than anything and she fights every day to achieve that freedom. Some days are easier than others. We often hear that as parents we have to ‘want’ it for them until they can want it for themselves. To me, as the parent of an adult, (for adolescents this feels different for me) this type of ‘want’ is the wanting for them to be healed from the illness, who, for so many, deep in the illness can’t see the light at the end of the tunnel and often times don’t truly know how ill they have become until it’s almost too late. So we ‘want’ for them, we hold HOPE for them and we with great love wait for the whisper.

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