Peer Support

Peer Support

By Colleen Wise
F.E.A.S.T. Board Member and Around the Dinner Table Forum Moderator

“Promise me you won’t throw up after meals anymore,” said our pediatrician, as he patted my 17-year-old daughter’s bony knee.  He had dismissed all the worrying symptoms that had brought us to his office—the drastic weight loss, the dizziness, the inner cold that had her wearing three jackets at a time.  All her vital signs were ‘low but within the range of normal.’

“Wait…what should we do?” I asked him, as he turned to leave.

“You could take her to a counselor,” our pediatrician told me.  He scribbled a phone number on a scrap of paper.  “You could try this program.”

My daughter was ill.  She was behaving in a confusing and irrational way.  She was in danger and I didn’t know what to do. I looked up the program the doctor had recommended – it had been discontinued five years earlier.

We were utterly alone.

We needed guidance; so, with nothing to lose, I sat down at my computer and googled these three words: ‘parent,’ ‘support,’  ‘anorexia,’ and up popped the Around the Dinner Table Forum.

Around the Dinner Table (ATDT) is an online support forum sponsored by the nonprofit organization, F.E.A.S.T. (Families Empowered & Supporting Treatment of Eating Disorders).  I believe that the parents on this forum literally saved my daughter’s life.

Here were other parents going through the same crisis as we were.  Some of them had successfully helped their children recover from an eating disorder.  Others were outright newbies, like me.  What we all had in common was a powerful instinct to help our children, and a steely resolve to do it no matter how great the obstacles, and a desire to lead other parents through the same difficult journey – to leave the lights on for those coming up behind us.

Like any other support group, ATDT offers true empathy.  But far beyond that, the parents there offer truly practical help in real time, including tips for refeeding and 24/7 emotional support from parents all over the world.  It is an incredible community.

In addition to peer support, ATDT led me to resources about the various treatments available for patients with eating disorders. I learned that eating disorders (EDs) are mental illnesses and not lifestyle choices or a result of bad parenting. I also learned that, despite this fact, very few treatment methodologies actively involve parents in the treatment process, despite evidence that families can and should play an important role in treatment, especially with children still living at home. I learned about a treatment protocol called Family Based Treatment (FBT) which is proving to be the “gold standard” of care for adolescents with EDs, but in which few treatment providers are fully trained. I also learned about the biological effects of malnutrition on the brain and the fact that ‘food is medicine” for eating disorders.

Unfortunately, effective treatment for EDs is hard to find and many families only stumble across the ATDT forum after trying all the treatment options available to them. Many of these families wind up supporting their children at home using the principles of FBT, but without the support of a trained professional. For these families, having peer support may be the only support they have.  For families who live in remote areas (and even major metropolitan areas) a support forum can be a godsend where effective, evidence-based treatment is not available.

What I’ve found surprising is that even families who have good professional support also benefit from peer support.  Experienced parents can offer concrete suggestions, helpful tips and validation as an adjunct to the care received in a treatment program.

Not every family is able to care for their loved one at home, especially if they have not been taught the skills needed to support the patient’s needs.  Hospitals and residential programs are appropriate treatment models for many sufferers, but health services or insurance companies too often terminate residential or inpatient treatment when the sufferer reaches a certain BMI, but long before they are fully recovered.  Post-residential treatment often falls on the family, with or without a good transition plan.  For these families, talking to others in the same predicament can reduce stress and anxiety, instill confidence and empower them to support their loved ones more fully.

Peer support is available in many forms:

  1. ONLINE MESSAGE BOARDS, like the ATDT Forum, is available 24/7.  When you are sleepless with worry at midnight in the US, someone is waking up in Australia who can calm you down.  With over 5,000 members globally, F.E.A.S.T.’s ATDT Forum offers a wide variety of opinions.  While it is a public forum, it is anonymous and privacy can be protected behind a screen name.  The format allows for easy searches on any topic, and particularly good posts are archived in the Hall of Fame.
  1. FACEBOOK GROUPS are a format that is already familiar to many caregivers.  Facebook comments tend to be short and immediate and many caregivers access FB frequently throughout the day on their phones.
  1. LOCAL SUPPORT GROUPS can provide real face-to-face relationships.
  1. PHONE AND EMAIL communication can extend support beyond weekly or monthly meetings.
  1. ONE-ON-ONE MENTORING where an experienced caregiver may mentor new parents, creating a kind of ad hoc doula program.

The diagnosis of an eating disorder is a crisis situation for families, yet can be extremely isolating for patients and caregivers. Unlike a diagnosis of cancer or serious injury, neighbors and friends don’t tend to reach out with emotional support, or bring over casseroles for dinner.  Connecting to others going through the same struggles, in whatever format is comfortable, reduces a caregivers’ isolation, confusion and fear.

Peer support is, without question, a powerful component of eating disorder treatment.

It is important to remember that peer-to-peer support is not a substitute for on-the-ground care.  The treatment of eating disorders requires medical oversight during re-feeding, therapeutic support and dietary consultation. Peer support for families, and the inclusion of families in the treatment process strengthens the safety net around the ED patient, greatly increasing their chances of recovery.  Regardless of the evidence-based treatment being used, this is true:  when you support the family, you support recovery.

Resources:

www.FEAST-ED.org

www.aroundthedinnertable.org

Local support groups may be found through your treatment provider or here at F.E.A.S.T.:

http://www.feast-ed.org/?page=LocalSupport

 

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