By Nicki Wilson
1. How did you find your path to parent advocacy?
My oldest Daughter, Emma, was displaying clear signs of an eating disorder at the beginning of 2011. We faithfully headed off to the family Dr. confident that all would be sorted with a ready diagnosis and subsequent clear pathway of treatment to certain recovery. Our experience, unbeknown to us at the time, was typical of the majority of families in our situation not only in our country, New Zealand, but around the world. It was frightening, distressing, devastating! Like most parents / carers of loved ones with an eating disorder we negotiated and navigated our way through a range of barriers to her recovery: from the shocking lack of knowledge and access to evidence based treatment in the medical world, to the isolation and shame and stigma among family and friends.
It was when we found F.E.A.S.T., and the Around The Dinner Table Forum, that we truly gained an understanding of the illness our daughter was battling, and learnt how we could play a role in her recovery. The support, advice and understanding that we received online enabled us to put an end to our daughter’s suffering and rebuild our family as a whole, and each of our lives individually, back to the “normal” happy state we were in prior to the arrival of the Eating Disorder.
During our journey to Emma’s current hard-earned physical and mental wellness, we yearned for contact with others on the ground, with whom we could share our fears, horror, hopes and ideas. We asked clinicians to pass our contact details on to parents who may like to connect with us, but were told this was not possible for legal (privacy) reasons.
So as soon as I could see the light at the end of the tunnel, I put up notices in Dr surgeries and hospital waiting rooms inviting others to a get together for carers at a cafe in town. The response was gratifyingly positive. Very quickly a group of local parents began gathering together regularly. We learnt that in the despicably abnormal world of eating disorders, what was going on in our lives was normal. The support and understanding of peers was comforting and validating, and the information sharing empowering.
The founders of EDANZ, who set up this not for profit organisation 7 years earlier to lobby for better services in Auckland (the largest city in the country, one hour’s flight north of where I live in Wellington) heard about what I was doing in terms of caregiver support, and by then, lobbying among health professionals and schools, and asked me to join their Board.
EDANZ has now developed a national presence and we focus on three principal areas: advocacy, education and caregiver support. Just over two years later I am now the chair of EDANZ. I have to say this was not a role I sought – in fact I did turn down the request a couple of times before agreeing to it. I was concerned mostly that being in this role would limit my availability to continue to offer support to caregivers & lobby for better services in my region.
2. What does your advocacy work consist of/how do you define advocacy?
Advocacy is speaking up, speaking out, providing accurate and useful information to audiences who will benefit directly or can influence or assist those who can.
I take every opportunity to spread the message of the seriousness of EDs, the current inadequacy in knowledge and training among clinicians, particularly primary health care providers and the desperate need for better access to evidence based treatment. I have been interviewed for press and radio on several occasions, sometimes with disappointing results (my words misquoted, misrepresented or out of context) but usually worthwhile if only for the purpose of getting the EDANZ freephone number out to those in need who may not have known about us.
I’m making inroads by running a tutorial with 5th year med students as they go through their 6 week psych block (so little, but two hours where there was nothing previously) This has lead to further opportunities to present to groups of health professionals and interested parties.
3. What change do you hope to affect?
1. Shifting society’s belief that EDs are a selfish choice of vain teenage girls with a desire to control their lives, to the knowledge that people with EDs are suffering dreadfully with a biological illness that is potentially deadly but with diagnosis and treatment, full recovery is possible.
This entails educating (reprogramming) doctors, parents, teachers… to recognise signs and symptoms, and insist the sufferer participates in treatment.
2. Improve access to effective treatment. Lobbying for more informed, evidence based treatment, available to all.
4. What are some of the challenges/frustrations inherent to this type of advocacy?
The prevalence and strength of the myths and misconceptions – the resulting stigma towards sufferers and their families, and apathy from those who could make a difference.
Personnel and resources – so much need, so little time and manpower.
5. Top 5 things you would share with a family facing a new diagnosis?
2. Learn as much as you can – FEAST and ATDT!
3. No shame, no blame – don’t waste precious time and energy looking for a cause, get on with treatment
4. Take care of yourself and the rest of the family too – siblings suffer terribly with ED in the home
5. Be confident and strong – Know that you are your child’s best advocate and greatest supporter.
Nicki is a F.E.A.S.T. Board Member and active volunteer. She lives with her family in New Zealand.
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