Victory over Ed: All eating disorder patients deserve treatment, support and hope

Victory over Ed: All eating disorder patients deserve treatment, support and hope

by June Alexander and Lisa Burns

Right now I am on vacation, on a riverboat cruising along the Danube and beautiful waterways, from Budapest to Amsterdam. Until recently, due to an eating disorder, a holiday like this was an impossible dream.

Today I am the same person. Authentic, true me. The difference is that I have healed from the eating disorder that was a bully in my brain from age 11 until 55.

Healing did not happen overnight. There were many mental and physical health challenges, and times when sanity and life were in the balance, but miraculously I met enough health practitioners who offered encouragement when I needed it most.

For 11 years now, thoughts and behaviors of self-love, and feelings of contentment and peace, are the new daily joy. My life has purpose and I feel fulfilled.

• I have written nine books on eating disorders and have embraced a new family of support in the eating disorder field during this period of freedom.
• I am free to be a grandmother to five beautiful children.
• I am free to catch up on living: I often feel my children are more mature than me, and in many ways, they are, because I am catching up on the fun of childhood, of exploring the world and self in adolescence, of adulthood and motherhood, and of living in a safe, secure, stable, caring and loving relationship, without the eating disorder.
• Life is beautiful.

But none of this would be possible if doctors at any stage had said ‘go home, you are taking too long to get well; we can do nothing for you’.  I am grateful that even when they did not know how to help me, doctors did not say ‘you are hopeless’. I am ever grateful they encouraged me to keep writing, keep trying, and to ‘never give up’.

Recovery IS possible

• Recovery from severe and enduring anorexia nervosa and other eating disorders is possible.
• It is possible to not only recover, but also to live a fulfilling, purposeful and rewarding life…at every age.
• Every eating disorder has its own complexities and co-morbid challenges for the patient and their treatment team.
• Everyone deserves to be treated with hope and respect, and offered the best in evidence-based care at all times.

Which is why I support Canadian eating disorder advocate, Lisa Burns and her team of supporters, in their social media campaign to help save the life of a young woman, Coral, in Ottawa. Coral, 19, has severe anorexia nervosa.

Speaking for those who are silenced by illness

When the social media campaign began earlier this month, Coral’s weight was described as ‘deathly low’ and medical complications had developed after an eight-year battle with the illness. The hospital had given the family guardianship to allow them to sedate and nasal-gastric tube feed their daughter. Sadly, all the professionals hoped to do was increase Coral’s weight a little and send her home…

“The professionals have told her she is un-saveable. Can you even fathom the impact of this? Would medical professionals approach any other illness like this?

What I know for sure is that IF this were any other illness, discharge from the hospital would NOT be hanging over this family’s head. IF she was dying and there was no hope for life saving measures, which in this case, there most definitely is, the family would be surrounded by compassion, hospice would be offered, the family would be kindly supported by professionals. 

Instead, they are being told their child is a disruption to others. That her medical instability is ‘harming’ to others in the unit. The hospital wants her out!”

– Lisa Burns

The social media campaign gathered pace quickly, asserting that Coral deserved ‘the opportunity to be supported by any means possible, for as long as it takes to become nourished enough, given the time for her starved brain to become cognitively responsive enough to want to live.’

Advocacy can make a difference

A good news update is that the hospital and patient advocate has taken note of the social media exposure and now the hospital team is being very pro-active to keep Coral in hospital.

Visualize this 19-year-old on a riverboat cruise or another adventure: free of her illness, happily exploring and celebrating life with her family and friends. Coral, and everyone who has an eating disorder, deserves this chance.

It is not okay to deny this young person, or any person with an eating disorder, the best care, for while there is life there is also hope.

Recovery IS possible. At EVERY age.

Lisa Burns and her advocacy team have helped to bring the plight of this Canadian family and their daughter into the light.

Staying quiet about eating disorders is not an option. Through sharing our stories and sharing them widely, at all levels, in a safe and supportive environment, we can make a difference, and we can help to save lives.

You can assist, by extending the coverage of this issue to your networks. Lisa provides the following links in the ‘save Coral’ social media campaign, the titles of which themselves tell much of the story:

#CoralDeservesBetterCare

#WeFightForCoral

#CoralsNotAStatistic

#ACTNow4Coral

#WeWontGiveUpOnCoral

https://www.gofundme.com/path-for-coral

https://edcarersunited.wistia.com/medias/yyl4ijvw6z

Why Lisa is a passionate advocate in the eating disorder field

In April of 2013, 19 months after our daughter’s diagnosis of anorexia, binge/purge subtype, due to her age, 18.5, and abysmal availability of treatment, she chose to leave the care of our home and refused all support from us. Our family was left shattered, alone, frightened and lost. After many, many months of searching for support, I was enormously fortunate to discover other families through on-line forums like F.E.A.S.T and Around the Dinner Table. In December of 2014 I became a co-founding member of Eating Disorder Parent Support. My passion comes from the desire that no family or carer, with a loved one suffering from an eating disorder, will ever feel the level of loneliness, isolation or fear that we experienced. Instead that they feel supported, understood, embraced and provided with the tools they will need to actively care for their loved one.

Lisa

Links for support

Eating Disorder Parent Support (EDPS) is an international support group for adults who care, or have cared for a loved one with an eating disorder. Many find that EDPS is a lifeline that helps them stay afloat while battling their loved one’s eating disorder.

The “Around the Dinner Table” (ATDT) is a global online community of parents of eating disorder patients around the world. ATDT is a moderated 24/7 Forum that has connected and supported parents since 2004. Ignorance and stigma about eating disorders can isolate patients and families at a time when support is needed most. Many parents have found ATDT to be a valuable resource for day-to-day, meal-to-meal support that goes beyond what a clinical treatment team can provide.