By Nathalie Decoo, Belgium
Why do I care for others? Why do I want to matter to others?
People who know me would say: “Can’t you leave all that stuff behind you?”
To all those people who talked to me like that my answer is “No, I can’t just leave it all behind”. On the contrary, it’s all that I want to do; to help others.
Why? (Always this same question J)
Because when I was sick there was nothing: no specialized centers, no real specialized doctors. My parents were stigmatized and I was separated from them and myself by my eating disorder, without any knowledge of it. It hit us like a bomb. Our family exploded and never came back as it was before. More than twenty years has passed. Twenty years of destruction, reconstruction.
But that’s the past.
I live in the present. I’m married, have three children and have founded my own eating disorder organization.
There is much work to do. Plenty of ideas, plenty of energy (er…, not always… the illness left some after-effects).
I have no special education. I went to school until my seventeenth birthday with a long absence during my final year. I tried to study languages. I passed successfully during my first year in college but had to stop during my second year because I was too sick again.
Alone. In a little, empty, cold room with my books.
I still love books but am no longer in my little empty room.
Today, I define myself as a “carer”. My organization assists patients and families who are on the long path to care and recovery. Recovery is possible! I care for others by developing network around me, with professionals and other organizations in our country, and further afield. Appropriate and early professional care is a priority.
We co-operate with other organizations with a similar mission. My French-speaking self-help group offers assists people with eating disorders through phone calls, social media and we also arrange face-to-face support groups.
Support for teenagers is a focus, but we need support and help for all sufferers. When you begin suffering from an eating disorder you’re often a teenager. But what if you’re no longer in your teens? What help is there for people with eating disorders when they grow older?
When you’re an adult you are confronted with the adult world, where you have to work, pay bills, pay for insurances … and adult care for eating disorders costs a lot. Too much.
I lost my work. I lost my insurance. Many others have the same experience. Is an eating disorder considered as an illness for life? Can’t we heal and have a health care insurance again?
There is great need to elaborate on these major specific “battles”. Carers can assist the discussion by working to:
- know the illness very well, and stay informed
- let go of anger about past experiences with the health care system and have empathy for our own past with the illness
- not feel less than anyone else because we had such an illness
have faith in what we believe and share our experiences with others, like professionals, who can acknowledge or give advice
- build a solid network around us to get help from others
- delegate immediately when the load gets too heavy
- acknowledge our experience is valuable and can be an example for others, and a way to teach people about eating disorders
- encourage exchange of experiences with professionals, patients, and “carers”, because sharing can be beneficial for all
I have hope and have confidence this work will be done.
- We are developing the first global hotline for all French speaking sufferers, family and friends in Belgium. Professionals and organizations will take turns for the first time in Belgium to answer the calls.
- We hope to develop further support, in and outside Belgium. We often work with the Flemish part of Belgium, and in France where we work together to organize events such as the World Eating Disorder Action Day on June 2nd.
- On June 2, we plan with the Flemish organization ANBN and France to make a film with testimonies of former sufferers, families (supporters), politicians and doctors. All to give hope, raise awareness and make things move forward in the battle against eating disorders.
Why June 2nd is Important to Belgium
- In Belgium, there are not enough beds when people suffering an eating disorder need to be hospitalized in specialized centers. And the waiting list is long.
- The major difficulty for people suffering, and for their family and friends, is to find appropriate help. Remembering at all times that a good relationship has to be created between sufferer and practitioner to win the battle.
- There is a need for specific education about eating disorders for all health practitioners.
- There is a need to construct an education program for all professions that have a link with people affected by eating disorders.
- Early detection is a priority and this needs to be emphasized in education.
I am, 42, and live in Belgium, in the countryside near Brussels. I am married to a French man. We met at work when I was 23. He[my husband] helped me get out of the hell of eating disorders and particularly anorexia nervosa which I had begun to suffer from the age of thirteen. My husband has been very helpful with his patience, his dialogue and love for me. We have a thirteen-year-old daughter, and two sons, aged ten and eight years old.
I want to help others along the path of eating disorders ‘recovery’ because, when I was ill, in the late 1980s, there were no specialized centers or experienced people to assist.
So today I help and support others and work voluntarily with all my heart.
Anorexie Boulimie Ensemble asbl (Belgium)
Email : firstname.lastname@example.org
Twitter: https://twitter.com/anorexie_tca @anorexie_tca
Join Nathalie in supporting World Eating Disorders Action Day. Be sure to follow along on Twitter @WorldEDDay and hashtag #WeDoAct, #WorldEDActionDay, @WorldEatingDisordersAction on Instagram and World Eating Disorders Action Day on Facebook.