A podcast with eating disorder therapist Karin Lewis tells of how a love of writing and family helped me to forge a life of my own, beyond a 44-year battle with anorexia nervosa. As background to the podcast interview, Karin invited me to address the following questions:
I believe improvement in life quality is possible for everyone regardless of the length or severity of their illness. Improved life quality and fulfilment is an attainable goal for everyone. Small steps are giant steps when an eating disorder has been part of one’s life for a long time. For me, recovery is the freedom to live a full and purposeful life. I am not the same person I would have been if I had not developed anorexia nervosa at age 11. The illness experience is part of who I am at age 71 today. Much has been recovered in the sense that today my healthy-self navigates my way through each day, but not everything has been recoverable. For example, the impact on aspects of physical health and relationships, and opportunities. I describe my state of being as one of ‘ongoing self-healing’. I aspire to enrich my life in a meaningful way each day. We can all do this.
There was a defining moment when I knew that I was 51% healthy-self-ME! This moment occurred shortly after my daughter’s wedding in 2005. That event had required great courage for me because guests included people who for a long time had considered me “the Problem” in the family and therefore were triggering to my fragile self-esteem. For weeks prior I worked with my therapist on a mindfulness technique to manage my fears; I visualized myself as a beautiful tropical bird, who could soar over people when feeling insecure or threatened.
This imagery enabled me to present with dignity and grace on my daughter’s special day. Her dad later gave me the best praise – he said, “You deserve a gold medal for the way you coped today.” I got something more precious than a gold medal, I got my freedom from my eating disorder. This was the best reward ever, for being brave and confronting my fears, rather than taking flight.
The pinnacle moment occurred one evening several months after the wedding. I was sitting on my verandah in the country, with my dog and cats at my feet, gazing upwards at the starry sky, at the Milky Way. Suddenly I was aware of a ping in my brain and I knew I was now 51% Me. Never again would I fall below 50% ME. The same ping had occurred when the anorexia took seed in my brain at age 11 under the guise of being a friend to help me cope with intense anxiety.
For 44 years, the ED had infiltrated and manipulated my thoughts and behaviors, for many years exerting a 95% domination over my life; to reach 51% in Healthy-Self meant that healing efforts suddenly accelerated. My healthy thoughts and feelings now had more say than the ED. I quickly soared to 95% health-self-Me.
The last thing to be eliminated on my ED healing journey was unhealthy relationships – that is, relationships that had formed and aligned not with my healthy-self traits but with connection to my ED traits – relationships that left me vulnerable to exploitation, coercive control, and manipulation, both in the workplace and in personal relationships. These maligned relationships could have a powerful magnetic hold, as strong as the ED itself.
The eating disorder’s constant torment meant that every time I worked hard and achieved a stable, safe and secure environment and lifestyle for myself, I would become very anxious and do something to attract fresh havoc. Chaos was familiar. Stability, peace and contentment were not. So, while the ED was an internal monster, residing in my brain, its effects had manifested externally in relationships, and these effects also had to be confronted, dealt with and severed, for my healthy-self to fully flourish.
My most challenging recovered experience was my daughter’s wedding day. Unfortunately my family of origin did not understand the effects of a severe eating disorder and by now I had been considered “the Problem” in the family for many years. Wedding invitations were extended to all family members. However, I was feeling nervous because I had not been invited to my niece’s wedding, which took place one week prior to that of my daughter.
Friends said, “Those family members won’t come to your daughter’s wedding, that would be hypocritical,” but I knew they would. The years of recovery work I had achieved to this point was about to be put to the test. On the big day, I managed to stay afloat, that is, not regress and turn to eating disorder behaviours as a way of suppressing my deep feelings of rejection, alienation and anxiety and refrained from engaging in eating disorder behaviours.
I kept thinking of my beautiful bird, and of my beautiful daughter – this was HER special day and I was determined not to allow ED or others to scar it. In the weeks leading to the wedding day, with treatment team and friends, I rehearsed the imagery technique that would allow me to soar high in the sky if feeling triggered. I also strengthened positive thoughts by repeating them over and over in my diary. I envisaged I was a soldier, preparing for battle. Writing the positive, self-affirming words, as well as thinking them, helped to reinforce my resolve.
My daughter’s wedding was to be my most challenging recovery experience and ultimately my most rewarding self-healing experience.
My parents died in 2009 and 2010 – while they were alive, I continued to hope for their acceptance of me – of healthy-self ME. I would visit and call them regularly against advice of doctors and close family/friends who warned I was only continuing to bruise myself afresh. I had worked hard on my recovery for more than 20 years and wanted to share the ‘real me’ with my parents – I wanted them to see that the real June, the little girl they knew before anorexia nervosa came to stay, had been there all along, just repressed by the eating disorder, and now was free. I wrote many letters to this effect. Sadly, too much time had lapsed for them to consider family healing. I remained estranged. So, in many ways I had grieved for loss of my parents long before they died. When they died, my major emotion was relief.
Departing the church after the funeral of the second parent, my children’s dad said, “Now you are FREE.” I would longer hope for something that was never going to happen.
I remain estranged from my sister and her family. Accepting doctors’ warnings to avoid triggering people who are toxic for my health, has been essential. Doctors warned against “being shackled” to my parents’ graves. “If you do not let go,” they said bluntly, “you will be unable to live.” Recovery work has taught me to focus on the present moment and to engage with supportive family, friends and the community in ways that help me to feel connected, accepted and purposeful.
My four children – three sons and a daughter born in the four years year prior to my 26th birthday – were always my biggest motivation to recover my healthy self. I wanted to “get well” so I could write my memoir for them, so that they would know my true story and the true me – the ‘’me” that was there all along, imprisoned by the eating disorder. Within 12 months of achieving 51% healthy self, my first grandchild was born (2006, when I was 55) and he became my benchmark for celebrating years as “true, healthy-self me”. Without connection with family of origin, my children’s dad encouraged me to focus on our children and now our grandchildren because “these are your family now”.
My children had been born before I accessed help for my eating disorder/chronic anxiety/chronic depression, and it was my love for them when they were young that gave me the strength to first reach out for help. Growing up with a mother who had multiple mental health challenges was not easy for my children. I wanted to show them that I was not the unreliable, irresponsible, self-interested person described to them by family of origin members. I was someone who developed a severe illness at age 11, and was working hard to heal from it.
I had developed anorexia nervosa in early 1960s when little was known about the illness, especially in rural areas. Ignorance prevailed. I was an embarrassment. I did not fit in. Over the years my family of origin progressively created a life for themselves that excluded me, and increasingly my children. By the time I had regained my healthy-self more than 40 years later, the family dynamics were too embedded, for family healing to take place. I had changed, (I had to, to survive), but they had not.
My children’s dad George, who I met when I was 16 and he was 18, and married at age 20, has been a lifelong rock, despite the difficult challenges. Unfortunately, (my biggest regret) my eating disorder destroyed our marriage a few years after I started recovery work and was placed on heavy medications in my 30s, but the eating disorder could not destroy our shared love for our children (and now our grandchildren) and to this day we have regular chats, occasionally meet for coffee, attend family gatherings as Grandma and Grandpa, and share gifts for our grandchildren on birthdays and at Christmas.
We are in our 70s now, and I continue to be grateful to have George in my life – he was everything I was not when my ED raged – he was stable, safe and secure. He was safe. He remains this way. My psychiatrist also was instrumental in my recovery although my husband blames him to this day, for ruining our marriage. I met the psychiatrist at age 33 and saw him for the next 30 years.
Initially, I was placed on high doses of prescription drugs and my mind was affected; for a long time, I did not know if a thought was of my true self, of the ED, or of the prescription drugs. My identity was in tatters. My psychiatrist was patient and said his door was always open for me. He encouraged me to help find my voice by communicating with him through writing as I was able to express myself more completely this way than verbally. He encouraged me to explore life to re-discover my identity without the eating disorder.
If I tried something such as a relationship and it didn’t work out, that didn’t mean I was a failure; that simply meant that person was not suited to me, and therefore try somebody else. Much of my 30s and 40s was lost in the wilderness of the mind, trying to find a way out and to learn who I was without the eating disorder. Also, a church minister, a dietician and a best friend were integral to my survival and recovery. I’m forever grateful to the people who accepted me, didn’t always understand me, but believed in me when I was unable to believe in myself, and stayed by me while I found my way.
I have never felt triggered when working in the field of eating disorders. I entered the field of eating disorder advocacy in 2009 when invited by Claire Middleton, founder of The Butterfly Foundation in Australia, to share my story at an information evening for parents and grandparents at an all-girls’ school in Melbourne. This was the first time I told my inside story publicly.
Due to shame and stigma, I had kept my story within for more than 40 years. I felt nervous but was reassured when members of the audience stayed behind after the session, to speak with me. I began to feel accepted – accepted not by my family of origin but by people who when they heard my story (which for decades had kept me imprisoned) did not shy away; rather, they treated me with respect.
I attended my first eating disorder conference in 2009 – it was the Australian and New Zealand Academy for Eating Disorders conference in Brisbane. I felt like a mouse in the auditorium and feared I had no right to be there. After all, all I had was experience that had shaped my life since age 11. Here I was, among people with letters after their name. They were all somebody. It was during the plenary session that bells began to ring, and lights began to go on, in my mind. I wanted to jump from my seat and call out, “You are describing my life!” “You understand!”. After decades of feeling misunderstood, and inadequate, I was now among people who accepted me as I was, inside and out. They did not judge me. I felt like a fledgling, just leaving the nest.
As a high-functioning person with anorexia nervosa, I had worked full-time as a journalist for 38 years, but now I was to embark on the truly meaningful part of my life. No more secrets, shame or stigma. In entering this field of eating disorders, I have become part of a second family. A family comprising researchers, clinicians, and people with ED experience, who understand, support and respect me. A family of choice that remains part of my life to this day. So, rather than feel triggered, I have always felt validated, nurtured, inspired, and enriched, working in the field. In the field, I have found a home.
Yes, since 2007 I have been an open book! However, in my previous professional life as a journalist in mainstream media, I told nobody I had an eating disorder. For more than four decades, I led an inside life and outside life, due to the real fear of losing my job. However, since departing my full-time career in 2007 to focus on writing my memoir A Girl Called Tim, I have shared my story far and wide. I have shared it on The Diary Healer website, in the checkout queue at the local supermarket, in the post office, at the airport, on the plane, in my local Rotary club, with someone I meet while walking my dog, with anyone who connects, and with all of my friends outside the field (friends who don’t understand what an eating disorder is but accept and love me anyway).
I firmly believe that the eating disorder thrives in the dark and languishes in the light. So, I share my story and keep it in the light. The more light, the better.
Having lived with an eating disorder for more four decades, I estimate that I am 95% Healthy-Self and 5% eating disorder. So, sometimes the 5 per cent might speak or nudge, due to triggering situations, but it never gets anywhere because my Healthy-Self is strong and resilient. Any intrusive ED thoughts are immediately recognized, acknowledged, and dismissed. For instance, when invited to share my story on the national evening news on television, with a few days to prepare, I might fleetingly think “Oh, how will I look? Am I too big?” as anxiety about the upcoming event bubbles to the surface, but I shoo that thought away and eat my next meal and snack as normal.
I refuse to allow the ED to rob me of another moment of MY life (44 years was enough!) I use my pen as my sword in exposing ED for the bully it is, and in doing so, I am a voice and an advocate for all who continue to suffer silently.
I think therapy from a recovered person is effective because, as many families and people with an eating disorder have said to me, “You have been there too.” “You have walked my path; you have walked in my shoes.” “I feel I can trust you because you understand how it is for me.” And “Knowing you have recovered and healed after a long time with your eating disorder, gives me hope and inspiration that I can recover and heal from my eating disorder, too.” I believe that a recovered person is a vital part of any ED treatment team.
My love of writing began before I was five; I developed anorexia nervosa at 11. My love of writing therefore had evolved before the illness and has been the main influence on my career choice, but unaware to me at the time, the eating disorder definitely became entwined in my private writing, in my diary, from age 11, and after I recovered my healthy-self and began sharing my story publicly from age 55, my writing career no longer focused on newspaper reporting and editing, but on sharing the other part of me – the eating disorder experience – through writing and advocacy.
I have developed The Diary Healer website, have had nine books on eating disorders published, plus completed a PhD in creative writing in my 60s (too anxious due to my illness in my 20s), exploring the usefulness of writing in eating disorder treatment. So, my answer to this question is YES, my life’s shape, pattern and purpose has been intrinsically woven with eating disorders and writing!
My career path has been influenced by my eating disorder and my recovery – writing has been my comfort and my sword. During the development of my eating disorder, diary-writing was a survival tool – when, as a child, I tried to explain my inner feelings, I was told to pull up my socks, stop thinking about myself and that I think too much, I resorted to offloading thoughts and feelings in my diary, in a bid to try and sort and manage them. Later, the diary became entwined with the eating disorder as a coping tool; then, during my many years of recovery work, it became a self-healing tool, and today it is a self-maintenance and self-growth tool.
Writing has provided me with a lifeline, a voice, and a companion. It has provided comfort, connection, and an avenue of self-expression. The diaries have documented, and are a testimony to, my long struggle with an eating disorder and search for self. Since my recovery, the diaries have provided a repository of experiences to be drawn on in helping to raise awareness of eating disorders, and to educate people about eating disorders.
Leading researchers have commented they enjoy writing books with me because the stories I gather help to illustrate their evidence-based findings in a way that others can readily understand. My writing helps to shine a light in dark places. Above all, my writing lets others know they are not alone in their struggles, in the way that they feel, and lets them know that I accessed help, and recovered my healthy self, and they can, too.
Not sure what this means but a beautiful moment occurred when my first grandchild was born in 2006. The phone rang late on a busy publication day in the newspaper office – baby was coming six weeks early. I jumped in my car and drove 1.5 hours to the hospital, arriving in time to follow my children’s dad and his partner into the ward to meet our new grandchild. However, I held back, fearing even then that I was not worthy of being a grandma.
The label of problem-in-the-family from my family of origin was deeply embedded in my psyche. But my daughter said, “Hey Mum, would you like to cradle your grandson?” My heart was filled with joy, as I stepped forward, saying, ‘Yes, please’. My daughter has since said, “All I want is you as my mum and my children want you as their grandma.” Acceptance is such a beautiful word. I am glad I never gave up on recovery because today I am good enough to be a grandma. And I love being a grandma.
I have a few mantras – my favourite is, “Fear is a wall of nothing through which I can pass.”
Another is, “An Eating Disorder is a family illness.” My experience illustrates that recovery from an ED without family of origin support is possible, but the task is easier when all family members are supportive of treatment. Inclusiveness is best.
I grew up sensing that I was not what my mother wanted (she had wanted a son; I grew up with her calling me ‘Tim’, when good and, ‘Toby’, when not so good). When I entered puberty early, my anxiety intensified and anorexia nervosa developed because, one doctor said, I did not want to grow up and did not want to be a girl. At age 11, I certainly did not want breasts. Needless to say, my sense of identity and self-acceptance, due to efforts to please and be accepted by my mother, was very mixed up. I took a long, long time to accept and understand that I am okay as I am.
My psychiatrist once said, rather bluntly, “June, life is not fair.” I felt indignant and angry when he said this because at the time I was bemoaning an injustice – I liked things to be fair and equal. After stewing for some days, absorbing these words, I began to realize my psychiatrist was right.
By expecting everything to be ‘fair’, I was setting myself up for continued disappointment and increased anxiety. It was a way of hanging on to my eating disorder – always doomed to fail. ‘Going with the flow’ is a much better attitude. I learnt to instead focus on the Serenity Prayer – do what one can, and let the rest go. Life is not fair. Don’t expect it to be so and contentment will follow.
LOL, I can talk about the benefits of diary-writing for hours. I encourage everyone to record their story. It’s the best way to develop a close friendship with self and future generations will be very grateful.
I hope through sharing my story, to inspire and give hope to adults ensnared in a ‘living hell’ with an eating disorder today. My experience is that recovery CAN occur at every age. That’s my heartfelt message.
It is NEVER too late to seek help.
Thank you, Karin, for being you, and the wonderful advocacy work you do in the field of eating disorders. Giving voice to people with experience is vital in efforts to understand the many complications that eating disorders present.