I love to participate in online eating disorder surveys, especially those inviting ‘lived experience’ to be shared. I haven’t always felt this way about sharing my illness story, so what has changed?
Firstly, I have been with narrative mentor, Dr June Alexander, as a client for more than three years now, using writing as a therapy tool. June has authored over 12 books and recovered from an eating disorder (ED) at age 55. Slowly over the past three years, I have been inspired by her work in the ED field as an advocate and have realised there is tremendous satisfaction in having your voice heard when you relate your own ED story to active listeners.
Secondly, the first ED research project I participated in led to an interview with the researcher’s assistant. This experience was a revelation. I found myself in the surprising position of being listened to by someone who genuinely wanted to hear what I had to say of my lived experience. I couldn’t believe that people would be interested in my journey and in my thoughts, values and opinions about ED recovery, ED advocacy, and ED treatment.
Thirdly, I have also joined Eating Disorders Victoria’s online support group for Severe and Enduring Eating Disorder (SE-ED) and have found this immensely satisfying – to have the opportunity to share some of my own history/current concerns/personal issues/opinions and thoughts with other sufferers of eating disorders as well as compassionate facilitators.
All three above factors have inspired and empowered me to want to continue to share my experiences – even though I am not recovered. This is an important revelation, because for a long time I have held the misconception (perhaps) that nobody is interested in my personal journey because I am NOT recovered from my ED. When surveys do not stipulate recovery as a prerequisite, I feel buoyed, knowing this is another chance to not only further understand my illness, but also to experience the satisfaction that comes with feeling heard. This is exactly how I felt on reading this week’s email from the Butterfly Foundation inviting research participants for an upcoming ‘Lived Experience Week’ campaign. I responded, promptly.
By voicing my perspectives, my experiences, my story, I feel empowered. So far, I can’t say that participation in opportunities to share has motivated me towards recovery, BUT taking part has made me feel that I count.
I feel legitimised. I feel heard. And I feel valued. I feel like even though I have had my ED for over 40 years now, people still care.
Before I started participating in these opportunities to share, I felt like a nobody, that my own story should be swept under a rug. That nobody would care what I had to say – especially, perhaps, because I don’t have one of those success/recovery stories to relate.
Easing the pressure for recovery can help enormously. Of course, this depends on the patient and each patient’s personality. For me, I needed the accelerator on recovery to ease as it was having a detrimental effect on me. The more I felt pushed towards that golden goal (that “miraculous mecca” of recovery, as I call it) the more resistant I became.
Sure, each patient’s needs will differ … which leads to my next belief, that ED treatment should be, MUST be, individualised – that is, carers/supporters/treatment professionals FIRST need to get to know and understand what makes their client tick BEFORE they start with the dietetic charts, the scales, the CBT, or whatever.
Carers and health professionals — get to know your patient first! Listen to their narrative. Encourage them to share their story. Everyone is different and everyone needs to / deserves to be heard. To be appreciated and understood for who THEY are, not apply a textbook one-size-fits-all approach – at least not until you can determine the ins and outs of the patient’s illness, because I believe that every patient’s experience is unique.
This kind of approach will help enormously in helping the client/patient to feel safe, protected, valued and respected.
Participating in online surveys/research projects that draw on first-person eating disorder stories is a non-confrontational way of sharing lived experiences. Being able to participate from home, surrounded by the comforts and security of my own little nest, has definitely made me more open and communicative. I never realised how much I had to say about ED treatment options, for example, before I found this platform for expressing myself. Most surveys have been anonymous, too, which enhances my feelings of safety and of control. The same happens each time I attend the online forum of EDV’s support group.
The other way I can let my inside story out is through my narrative therapy – writing has become a powerful vehicle through which I feel emboldened towards honesty and deep inner exploration, as well as sharing my deepest thoughts and perspectives about my own journey thus far with an ED.
Whether your experience with an eating disorder has been brief, or decades-long like Tanya and myself, your story counts. You may have recovered your healthy-self from the illness or, like Tanya, continue to be immersed in the recovery process. Or you might be a carer, a family member or friend of someone with the illness, or a health professional working in the ED field. Have you shared your story in a safe and supportive forum? What was the experience like for you?
If you haven’t shared your story yet, I encourage you to do so. When we have struggled with our illness for many years, in silence due to fear of shame and stigma, sharing our experiences for the first time can be scary – after all, our ED likes to keep us isolated, all to itself. Be brave, and reach out. Everybody’s experience, including your own, counts. The benefits of story-sharing are many, for you, for our dedicated researchers who are seeking to improve treatment approaches, and others. Together we can all make a difference. To share your story on The Diary Healer, email me at: firstname.lastname@example.org