This week I have had the privilege of treating a young person whose parents moved heaven and earth to fly them across the entire United States to seek what they believe to be the best care available anywhere.
Can you imagine how humbling that is for us? To be thought the best care by parents who are entrusting you with the most precious thing they have: their child? It’s not that they come with stars in their eyes and “yes doctor, whatever you say” written cross their foreheads—far from it, usually. They typically come after hours of conversation with our intake coordinators, asking questions, challenging, arranging insurance, arguing with disbelieving family members (“surely there’s the best care in the world in New York/Chicago/Seattle….”) telling their stories, crying, debating and taking a deep breath at the magnitude of a decision to put their lives on hold, fly three thousand miles and dive into the deep end of the pool of family-based treatment, Kartini style.
Typically those who come from afar have tried many things first, and “failed”. It never ceases to amaze me what parents go through in their quest for adequate treatment. Yes, in those urban centers where one would assume the best and most advanced medical care in the world resides, parents come to us having been told that their child is “untreatable” or “spoiled” or “a result of family dysfunction” or “struggling with autonomy issues from an overbearing family system”. Some have been in treatment for many months or years, with wholly inadequate weight gain; some have been medicated with medications from a previous century or another field (benzodiazepines, sleeping pills, laxatives…..), some have endured psychiatric hospitalization and separation from their loved ones “for their own good”.
The stories are diverse and scary. Maybe some of you have a few?
Coming from afar
posted by Julie O'Toole on February 3, 2012 at 5:00amtagged with: eating disorder treatment
2 Comments
Julie O'Toole
on 02/14/12
on 02/14/12
2
As we fight through the fall-out from a serious illness we get scared too. But there is nothing for it but to continue to fight—and fight together.
Add a Comment
Your comment may need to be approved before it will appear on the site. Thanks for waiting.
on 02/14/12
I am that mother. I came from NYC where doctors and treatment providers were busy treating co morbid or symptoms of anorexia but not the illness. Even some of best in the city looked only at numbers, weights not states and my dear daughter continued the plummet into the dangerous states of anorexia. They all treated symptoms. Depression, anxiety and eventuality self harm. They all kept us as parents at a distance. Emphasizing instead the need for developmental appropriate treatment. No one saw the agnosognia. No one saw her inability to be a leading or active part of her recovery at this stage. and they saw me as controlling, anxious and emeshed. A providers first question in a urgent family eating where my daughter in their treatment facility continue to rapidly deteriorate, losing weight uable to even drink fluids or eat was ” do you think your parents are really listening to you”. I kid you not. This was not a remote rural community. This time it was a touted medical stabilization program in Boston. I did not want to travel 3000 miles from home. Away from my sick 81 year old mother, my husband, my other children and for me, grandchildren, my job, my home. But I saw my options disappear and my daughters life now hung from a thread. I think I would have found a way to travel to timbukto if i believed there was hope. Ed treatment is still in it’s infancy and evolving. I have learned that no one can be a better advocate than me. The best physicians and providers use all their best assessment tools. Listening to loved ones is an vital tool. Taking and researching an accurate history is another. I have found a real multidisciplinary team here at Kartini. We are all on the same
page. I no longer feel alone. I’m still scared but I know we will work together to find the best care for my daughter. I believe in her recovery. And so do you.