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While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)? 

Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that  everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?

And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers.  But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness. 

All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.

Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and “time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong. 

If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!)  Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there. 

Moments like these can also be some of the most magnificent and humbling of points within our human experience …

 I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc. 

And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders.  To make certain adequate treatment is delivered, proper support and resources are available in all demographics. 

Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.

Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.

-shanti

 

 

         

 

Some incredible individuals and parent advocates have been hard at work the past two days in Washington working with legislators on Capital Hill for the annual Eating Disorders Coalition Lobby Day to push forth further measures and legislation in the continuation to further progress within treatment, research, prevention and education of eating disorders. 

This is vital and necessary work.  I for one am so very grateful, since I was not able to attend, for all of these individuals who have committed themselves towards improving the lives of those affected by this devastating illness and the families that are doing so much of this work solo, without much support, treatment resources, and clinicians adequately trained to best help their loves ones. 

Thank you EDC and its sponsors, Ms Laura Collins— you are the best!

 

Advocacy

“It’s about opening up the doors and ending the shadow of discrimination against the mentally ill.”

-Patrick Kennedy 

Today’s news is quite uplifting.   And the 268-148 vote does speak to the dire need to continue towards enacting mental-health parity and mandating health insurance coverage equal to that of physical illness for mental health  and addiction.  I think Paul Wellstone would be encouraged to see some progress being made after nearly a decade of back and forth bi-partisan bickering and huge corporate influence , (and currently, to no one’s surprise, big-ph-arm Eli Lilly  is really throwing a tantrum!), to strangle this vital legislation.

And there are plenty of critics who are rallying this victory as “mental-health insanity” and clearly looking only at their own financial dunk, but it’s truly time to stop stigmatizing those with mental illness who clearly need the same standard of quality care and treatment that any sane society would not withhold or financially ruin one with personally while working towards full health, healing and recovery.

I, unfortunately live in a state that does not currently have mental-health parity- yet.  But I was impressed to read an in depth study done last spring by the La Follette School of Public Affairs in our state, that despite not having all the conclusive data to make absolute recommendations regarding mental-health parity, has incredibly convincing and thought-provoking details putting to bunk some of the primary reasoning against implementing mental-health parity that I would encourage anyone interested in advocating for mental health disparity to read.   These studies really can be applied and adapted for further critique and implemented across all states, so that we will eventually see more than thirteen states that have adopted mental-health parity law.

-shanti

NEDAW         So many great happenings during National Eating Disorders Awareness Week 2008 – hope everyone is able to partake in some NEDAW events in your corresponding local areas.  This year’s theme,  much like last year’s,  is still quite pivotal and we can all do our share to spread awareness,  gently and compassionately encourage those who need support and treatment to take those vital initial steps with our love and backing.

Reach out, celebrate all our diverse shapes and sizes, EMBRACE each other, and share our stories- spread the word, be heard, dispel misconceptions and myths that still surround eating disorders and those that suffer- change can happen even with the simplest and smallest of steps!

Laura Collins, as always, an incredible inspiration, advocate, and Mom has posted some great commentary on the Congressional Briefing for the Eating Disorders Coalition with Dr Cynthia Bulik’s wisdom- Power to the People!

 XO

As any writer knows, the power of words can be Herculean. 

Reuters Health  briefly highlights a ‘applied text analytic methods’ study carried out by Dr Markus Wolf at the University Hospital Heidelberg in Germany that can be helpful towards improved therapeutic treatments, and better understanding of the cognitive processing of the eating disordered brain.

Many of us, as parents with children suffering from an ED might also know how delicate, negative, and self-defeating our childs’ thoughts, behaviors, and words can be to themselves- especially when we know how this illness robs our children of their true selves during treatment and recovery. 

That’s why it’s even more vital to remind ourselves first and foremost: we are not to blame or at fault for our childs’ eating disorder; and secondly, to separate your child from the eating disorder/illness, especially at the most difficult moments through refeeding, treatment and recovery when it can be the most challenging thing to remind ourselves of.

End Health Discrimination
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