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Do eating disorders carers need skills or support?

by Laura Collins Lyster-Mensh, F.E.A.S.T. Executive Director

One of F.E.A.S.T.’s earlier Executive Directors, Belinda Caldwell, made a very wise observation recently about the difference between the kind of “support” that parents look for when it comes to eating disorders compared with other kinds of caregiving:

“in ED we are looking to be very active and skilled whereas the focus for the others is more on self care and support.”

This was a lightbulb moment for me. I mean: I knew it –I do it all day — but I hadn’t quite parsed it that way and it matters.

It matters when treatment providers think that a parent’s needs and role are about feeling better and being cared about. If that’s all we really need, then a provider is going to expect us to be satisfied with a warm greeting and expect us to be grateful to be reminded to take care of ourselves. I’ve seen first hand how hurt providers can be when that is not received warmly. Their intentions are good, I know.

But if what we as parents are expecting is to be actively involved and to be taught skills and given coaching then it is going to be a jarring mismatch to be asked to wait outside or “let the professionals do it.” Treatment that focuses on the patient on their own without the family is not skills-building for the parents and siblings. Treatment that limits the family to self-care without active engagement for all family members may seem compassionate but it is more often deeply disappointing and even frightening.

This difference between “active and skilled” and “self-care and support” may indeed be the tectonic shift from the older ways of approaching eating disorders to the more modern approaches.

The old model looked at parents as needing to be fixed. The newer model sees parent skills and knowledge as powerful elements of treatment.

The old model looked at parent distress as a distraction. The newer model frames parent distress as normal and inclusion on the treatment team and skills building as a solution.

The old model looked at self-care as for the parents. The newer model looks at self-care for the parents as part of building the resources and success of the patient’s treatment. It assumes patients are in good care and that the family is well-resourced — because parents cannot pursue self-care when our house is on fire and our children are in harm’s way.

The old model saw the patient as the focus of treatment. The newer model sees the patient as part of a family and a community.

The old model told parents to wait outside for news. The newer model never had us leave the building.

I’m reframing the way I look at literature and services for parents, and deeply grateful for Belinda’s phrasing and insight.

 

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7 Comments

  1. Mel Stevenson

    And becoming active and skilled depends on having knowledge and understanding about eating disorders. Knowledge really is power because parents will find it easier to modify their responses to their sick child when they really have their heads round how these illnesses affect the brain and consequently have a clearer understanding of their child’s behaviours.

  2. Daryl

    Love the ‘old’ vs ‘new’ framing of parent skills and support! Want to send this to every eating disorder professional I know!

  3. Jacqui Mann

    I think there was an old, old unhelpful way that persisted that parents were part of the problem. The old way you describe of sympathy and support is still not widespread. The new way is to involve family and wether family circumstances were or were not part of difficulties it is the right way to go forward, without addressing real issues it will be hard to sustain a recovery.
    Parents need skills and support and need to be coached on supporting their child’s recovery and some of that will include self care, managing your own worry, temptation to over protect.
    I’d love to see it for ED of whatever age and actually I think all mental health needs to work in that way….as no one exists in isolation and your network/family need guidance on how best to be supportive or provide safety net. Mental health in the family is a chronic weakness that like epilepsy or diabetes needs to be understood and accommodated. Doing this frees the person to flourish at ……whatever. So if we can do it with physical conditions unashamedly we can expect it in mental health.

  4. Fiona

    Just a shout out for the parents who don’t come in expecting to treat their child’s deadly illness at home. I wasted valuable time and caused harm to all my family by siding with the therapists who wanted us to treat our child by discussing “issues” and against my husband who, used to a medical model of care, expected the medics to “do something”, eg admit or prescribe

  5. Stacie Stewart

    If your child is over eighteen when diagnosed, you will never be allowed to be active unless that is the patient’s wish. I think, as the person who knows her best and could see the deception and avoidance creeping in when she was home for a summer from college (not to mention the obvious weight loss), my daughter didn’t want me involved because I would always know.
    What do you do? Refuse to pay for counseling unless you are included? That was never an option. I even attempted to speak with the counselor to give insight into the progression of the condition, but she just immediately told my daughter I had reached out to her, so there was even more withdrawal.
    Three years, a Master’s Degree and a marriage later, I assumed the dietician and counselor were pleased with her progress when she told me she needed to go to PHP and then residential care. Again I reached out, and again a negative result.
    I finally reached out to a clinic she was not involved with and got information. My husband and I both had a virtual session for information and understanding, and I have had several subsequent sessions to discuss how to respond my daughter, how to process the condition and my role as a “parent of a chronically ill child.” I have read books and attented the FEAST virtual conference, which blessedly included sections on adult children.
    It’s better! I’m no longer riding out waves of despair propelled by frustration and ignorance. Knowledge is not only power, but also solace. Knowledge has given me a common language that has surprised, and I think pleased my daughter. She has told me that she has been so very embarrassed by the eating disorder and the anxiety that all she wanted to do was hide.
    Bottom line: If you are not given the opportunity to become active and skilled, then take the initiative yourself. The therapist I am working with consulted with me at no cost at first, and told me more in twenty minutes than I had learned in three years. You can be part of the support system even if you are uninvited.

  6. Margaret

    I recently listened to an old podcast (2017) on New Plates with Rebecka Peebles in which she mentioned the information they identify and share with parents before patients leave care at Children’s Hospital of Pennsylvania. Despite being an old podcast it was refreshingly new to me. Empowering parents with knowledge and skills are far more important than empathy and ideas for self-care. The ability of a care team to impart valuable skills to parents is the key to better outcomes. The message needs to get out there to parents about what information and training they should expect when their child is first diagnosed.

  7. Sarah

    This is a vitally important topic for us as parents isn’t it, so helpful to hear other people’s experiences. Here in the UK I find approaches are mixed and often confusing. Some (mainly older) professionals are stuck in the old model (parent blaming) and others, e.g. family therapists (as opposed to family-based therapists, who work on the new model) are just plain muddled in their thinking. We are lucky, we got FBT from the beginning for my 12-year-old daughter (now 17) in the NHS/CAMHS system. But something I became aware of and now guard against is the way this can switch round. I have often been made to feel that as I am the one being given the responsibility for my daughter’s care, when my daughter is struggling it must be my fault!

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