One of the most glaring omissions from treatment, having been through it twice in 7 short months, is the guidance and support offered by various programs to the "support people". The very people charged with the task of taking on the voices inside of our heads that they cannot hear or understand or sometimes, even believe. They are charged with loving us through an insidious disease that they likely never saw coming, nor fully understand. They take the brunt of its aim when our illness takes us over, acting as though she speaks for us, ruining any chance of lasting relationships with people who mean the most to us.
People whom we need the most, to help us fight when we are so sick that we cannot.
People who are forced to fight for us, with one hand tied behind their backs, ever-changing rules and in a darkness that threatens even the brightest of lights in our lives.
Mercy Hospital's New England Eating Disorder (NEED) Program requires that each patient identify at least one support person, who's job it becomes to offer 24 hour supervision (including mealtime and bathroom activity) when the patient is at home in the evenings and on the weekends. They are required to help with meal planning, shopping, meal preparation, portion-sizes and meal monitoring. In addition, they are asked to provide tough-love style support balanced with loving care and concern when emotions are high, when our eating disorders are fighting the hardest and without any direction or preparation for the onslaught that comes their way.
In the beginning of the treatment cycle, Olivia was stronger than me. I was deep in my illness, and I couldn't fight her alone, yet she had the strength to fight me AND anyone who loved me enough to try and hold me up until I could take over.
Let's face it. Most of us have never had personal experience with anyone with Eating Disorders until, well... until we DO. If you have been reading my blog thus-far, it has probably become clear that the unpredictable behaviors, powerful emotions, myriad of triggers, secrecy, relapse potential, serious danger of suicide and contentious socio-biological explanations for the disease that contribute to a dizzying and chaotic atmosphere for the afflicted, as well as the people who care about us, make success an almost impossibility.
I remember so vividly, looking around the room on my first and then subsequent Monday morning check-ins during partial hospitalization, acutely aware of the often perplexed and usually horrified expressions on the faces of our support people as we discussed the "voices in our heads", "urges", "noise", amounts that we purged or over-exercised, restricted, hid food when our unsuspecting support people weren't looking, or simply wanted to truly die.
I couldn't help them.
My support person couldn't help them.
Often, the treatment team, charged with the task couldn't help them.
The first time I was admitted to Mercy, I didn't want to help them. I was still trying to decide how much I actually bought into the idea of full recovery myself.
And it was MY job to share with my support person, what he should be doing to support me.
This never made sense to me.
It's akin to leaving the fox in charge of the hen-house.
Further, once our weight is restored and we are no longer medically in danger, our insurances (if we are lucky enough to have it) declare that it is time for discharge. Often, we are discharged back to the stressful and unchanged environments where we became sick in the first place, or without having enough time to absorb the new coping skills we were exposed to, to a new therapist who doesn't know us, for one hour per week.
I (Olivia) could do an awful lot of damage in one short week between visits.
Anyone who recovers under this scenario must use Herculean efforts to get there. It's no wonder that the recovery rates are so dismal.
Since most of us chose those closest people to us for support while in treatment, it is my belief, that if the whole system was exposed to the treatment model, we would have a much better shot at recovery, while preserving the most influential relationships in our lives.
My own personal experience with this break-down in treatment has inspired me to recover so that I can be a catalyst for change in this important aspect of treatment. This has the dual purpose of helping my own healing in finding (another) reason to heal and to direct my energies for future work that means something to me.
To that end, I am asking my readers to share their experiences, to the extent that you are comfortable, as people recovering from an eating disorder, direct support people who have been involved with a loved-one during treatment programs, and family members or friends who care about someone with an eating disorder, in this aspect of treatment.
Please feel free to share whatever you feel is important regarding your own personal experience with treatment in whatever role you participated in.
Share your frustrations, insights, true gut-feelings about the process and ideas for change. Please be candid and brutal in your honesty, even if (especially if) you were involved with me in some way.
Share in your own narrative form, bullets, lists, photographs, drawings, poems, ~ however you can best express yourself.
If you would rather have a framework for the discussion, here are some things to get you started:
Patients who have Experienced Residential, Partial Residential or Intensive Outpatient Programs to treat an Eating Disorder:
~ What did you wish that your support people understood about you (or your illness) that you feel they didn't or couldn't? (through no fault of their own)
~ What do you think, looking back, is the single most important thing your support person did/said/understood (or you wish that they did) that helped support you successfully in your recovery?
~How is your relationship now with your support person, at whatever stage you are in at this point in recovery?
Direct Support People
~What was the most helpful thing you learned from the treatment facility in understanding how to help your loved-one in his/her recovery process?
~What do you wish someone told you about being a support person, that no one did?
~Did you feel supported by the program in your important role of "supervisor" of the patient when he/she was home? Did you feel you had all of the tools and knowledge that you needed to be successful in your role? Why?/ Why not?
~Share some of the feelings that you associate with the process you went through (or are currently going through) and any ideas you might have for systems or processes that can support others who will go through this
~How is your relationship now with your (former) loved-one whom you supported through treatment, at whatever stage you are in at this point in recovery? If you are still involved, what do you need (for yourself) as an on-going support person as treatment progresses?
PLEASE participate if you have ANY experience in these areas of Eating Disorder treatment, either as a patient or as a support person or family member/friend. You can do so anonymously or if you are comfortable, feel free to sign your name. If you happen to be writing about me, please know that you have my permission to share that fact, and any and all details that you feel are important. I will not edit any entries (except for brevity and unless of course, they are not in the spirit of helping).
I plan to write a blog entry with all of your comments/input and will include all of the voices who take the time to share.
I think a candid discussion is the beginning to understanding how best to support the most important people in the lives of a patient with an eating disorder. I anticipate with eagerness, hearing the experiences of all who are willing to share this important information.
I plan to collect your submissions for this blog entry through August 10th, 2015.
Please consider contributing!
Send your contributions to me at dori30c@gmail.com and be sure to include if you wish to be anonymous when I share the information.
P.S. If you plan to submit something, however big or small, please indicate that you will be, either in Facebook comments or the comments section below so I can get an idea of interest.
Please consider contributing! (Did I say that already??) :)
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