Talk to me

I have a rule. In my work as an activist in the eating disorders world I do not correspond with people who are current patients. This is also a rule we maintain as best we can on the Around The Dinner Table online forum. I don't know of anyone else who has this rule, but I'm going to explain my policy about it and encourage others to give it some thought. It might be better for patients everywhere if we all put better boundaries around contact and put our energies into getting family and friends and communities what they need to offer real and accountable support.

I don't talk with current patients because I believe what I say is filtered through ED, as is what they say - it's a house of mirrors. I believe patients deserve help and support from real people with real influence in their life: family, clinicians, community and not the false support of anonymous strangers. I believe those who offer advice at a distance risk being a distraction from real help, and risk being used by ED. I believe ED is an anosognosic condition where the patient isn't choosing a distorted and blinded view, and I believe the only true outside help can come from those who can actually see reality in real time. All else is extra, and risky.

I would not have wanted anyone I didn't know to be counseling my daughter when she was ill, possibly validating her fears or offering old ideas about eating disorders.

I don't talk directly to patients because I refuse to overstep the boundaries of a stranger. I feel strongly that no one should intercede - even virtually - between a patient and their care team. I refuse to be used by ED to deflect, distract, palliate, or comfort.

And this: I think we risk doing it for OURSELVES and fooling ourselves into thinking we're helping when we're not.

You might think that my policy saves me grief, but it doesn't. It is painful. Some of my favorite people had eating disorders, let's not forget. The reality of telling someone "I care but I choose not to help you directly" is just lousy, especially when I know that they'll move on to someone else who will with good intentions do just what I've said I will not do.

The response to my rule is rarely good, as you might expect. It runs the gamut from "That's okay. I expected that. I don't deserve help." to "You f**** b***** you don't care!"

Not that one contact deserves more attention or grieves me less than another, but one last week was more painful because of a circumstance I knew about more personally. There are complex situations where people who are caring for someone realize they also need care. And yes, it is a judgment call. If I know the caregivers and we are all in touch then the situation is more nuanced.

What I do say is that I will talk with ANY caregiver. I will offer information and encouragement and help find local resources. I feel the most effective thing I can do, and really the only thing I have a right to offer, is support to caregivers. Occasionally a current patient will put me in touch with a parent, and I think that is a precious and brave act.

But I want to say this: I care. Believe me. It hurts so much to put limits on showing that, but it would be inappropriate and ultimately self-serving. There are people in everyone's life that can and will help in real life - personal or professional. If you really are in a place to ask for help, you wouldn't be contacting me - you'd be going to those people. Contacting a stranger who can't see or really help isn't reaching out - it's delaying reaching out.

Please reach out. Of course you deserve it, and you would try to get help for someone ELSE in your position. If you feel undeserving imagine someone you love feeling that way. If you feel no one will care know that humans aren't built that way. If there is a part of you that can slip a note to a safe person or safe harbor let that person do it for a while.

People care. You mean something - you have a name, you are alive, you have value.

Comments

  1. Laura, at the end of last month I contacted you, not directly asking for help but just to thank you for your work. You responded to me saying you couldn't help directly but the words in your email had been put together with such care and thought and were so motivational to me that it did not matter. The work you do is quite incredible and I'm sure anyone who felt angry or disappointed that you couldn't directly support them would see exactly why once ED had started to leave them - I think your reasons are valid. Thank you again for all you do, I printed your kind words to me and have reread them when I've struggled,I'm getting there slowly, day by day e x

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  2. Hi Laura :) I am a year into recovery, fully weight restored and rather kick-ass on the emotional front as well. I just wanted to say that it was always clear to me - a complete stranger, and one who was very ill as recently as the start of last year - how much you cared, just from reading your blog. I think you do a great job supporting caregivers, it must be very difficult and painful sometimes and of course you need boundaries. I would second your message as well - it is possible to fully recover from an eating disorder, and all those suffering deserve help to achieve that.

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  3. You have a good message and I understand where you are coming from but I am hesistant to agree with you on this phrase

    "I believe those who offer advice at a distance risk being a distraction from real help, and risk being used by ED."

    Sometimes outside help IS better than family support. The family is not always in a mental state or ABLE to do a Maudsley approach -- neither is it always appropriate. I know this is the approach you prefer to use, but in families that are abusive, have issues of their own, etc. it is not always possible.

    Also, support from therapists, dieticans, etc is obviously professional but it does not have to be "false." The advantage of using these people is that they are neutral and unblinded from ANY emotional ties, etc. They can suggest things that someone who is emotionally attached to the individual may not be able to, or point out behavioural patterns that are not helping the patient or the carer.

    I think you would consider me an anomaly because I have gained 21 lbs (though over 18 months) and have made therapeutic gains with my treatment team and WITHOUT my parents intervention. I believe it IS possible to recover without parental support, though some support is necessary.

    The professional support I have received has been invaluable and my therapist/dietican are willing to see me on Friday/Saturdays to accomodate my university schedule, etc. I believe that these individuals care, though not in the same way as my parents (obviously). It is their professional detachment that makes them so valuable and unlikely to give into my ED manipulations.

    I only really began to recover until I moved out of a toxic family environment and to university. This, unfortunately, is a fact.

    So, although I agree with you, I do not think your beliefs/boundaries hold true in every case.
    A:)

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  4. Anonymous and Katie, you both made me cry. Thank you for telling me that - I applaud your recoveries!!!

    A, I think you misunderstood. I wasn't talking about Maudsley or even family support - I was talking about the difference between live support (professional and personal) and strangers on the Internet. I agree with you completely!

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  5. Oh OK! Thanks Laura :)

    Good to know and I agree with you about online support. It is not enough when compared to live support.

    :) A

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