Redirecting eating disorder experience into advocacy helps to maintain recovery

Redirecting eating disorder experience into advocacy helps to maintain recovery

For years I said, ‘I won’t know who I am, without my eating disorder.’ I was fearful of recovery because the eating disorder dominated my identity. If you feel this same way, I’ve good news. I recovered from anorexia nervosa 17 years ago, but the illness has been allowed to stay. Rather than pretend it is not there, I have embraced it. I am me, with eating disorder experience.

The difference today is that I am in charge.  I use the experience gained from my eating disorder to inform and help others. Recovery did not require me to delete the eating disorder from my sense of self and shut it out of my life.  Rather, my challenge was to redirect the power of the illness. Instead of allowing the illness to inflict harm within me, I began directing it outwardly to help others.  In doing so, I became part of an eating disorder family.

I love being part of this eating disorder family. It comprises health professionals who are experts in eating disorder treatments, and people like me who have experience of eating disorders and who understand and support each other. This eating disorder family is global. Really, it is a ‘field’, but to me it is a ‘family’. The eating disorder family is separate from my personal family comprising four children, their partners, and five grandchildren. Each of these two families nurtures my ongoing healing and wellbeing.

Keeping eating disorder experience at the forefront helps me to stay free

My eating disorder bossed and bullied, impacted, and shaped my life for 44 years, from age 11 to 55. After years of such imprisonment and drudgery, why do I stay in touch with the eating disorder field? I stay in touch with the eating disorder field because it helps. Keeping the eating disorder experience at the forefront helps me to stay free.

When one has struggled with an internal force that is stronger than one’s own will for many years, the experience of that struggle remains beyond the exquisite moment of freedom. The language of the eating disorder remains in my brain, albeit reduced to an occasional whisper. Staying in touch with the eating disorder field helps to ensure the illness ‘voice’ remains well-behaved. Mostly it is tucked away in the far reaches of my mind but I draw on it when helping others. This engagement helps to keep the eating disorder in its place and strengthens me, too. This outcome is accomplished in several ways:

• Being a peer mentor – being a friend and support to others who are experiencing an eating disorder today.
• Being an eating disorder advocate – in national and international efforts to improve access to the best care for all people with eating disorders.
• Co-authoring books with leading eating disorders researchers to educate families, health professionals and people with eating disorders.
• Creating The Diary Healer website to share stories from all sectors of the eating disorder field, gives hope to all.
• Attending eating disorder conferences and meeting others face-to-face provides an infusion of wellness. Being treated as an equal among others who know about the eating disorder that, for decades, was a deeply shameful and secretive part of myself, is hugely self-affirming. I always return home with a heightened sense of purpose and reassurance that, “Yes, I am okay.”

In other words, by embracing the eating disorder experience, and keeping it in the open, fully in the light, instead of pretending that part of my life is not there and leaving it in the dark, the experience becomes useful instead of destructive.

Transitioning the illness from harm to hope

The eating disorder experience has transitioned from a negative force to a force for positive change. For decades the eating disorder dominated my life in a multitude of self-harming ways. Now, I am in charge. As an expert in illness experience, my knowledge is shared to assist others and, at the same time, add fulfilment to my life.

The eating disorder is part of my identity and part of me. The difference, now, is that I am the navigator, not the eating disorder. I love the luxurious feeling of being at peace with ‘me and myself’.

Children and grandchildren help me to ‘be’

My children provide an equally powerful infusion of wellbeing in my life. All my children were born before I could access a psychiatrist for a correct diagnosis and start the long process of eating disorder recovery. Life was not easy for them, growing up with a mother whose illness did not allow her to be herself. When we are together, ‘eating disorders’ are not mentioned. My children understandably don’t want to hear about the illness that took so much from me, and them.

They want their mother. Their mother without the eating disorder. How precious is this. When in their company, I love being “Mum without the eating disorder.” Family meals, for instance, are heaven on earth, because my mind is free to be totally present.

My grandchildren, born since my recovery, know me simply as ‘Grandma’. I’m not ‘Grandma-with-the-Eating-Disorder’. I am wholesome, fully-present Grandma. No eating disorder interference. How beautiful is this. The children have taught me how to be spontaneous, to let go and live in the moment. They have helped me to experience what childhood can be like without an eating disorder. They are entering adolescence now, and the new experiences continue.

My children and grandchildren help me to feel grounded, connected, accepted, wanted, and okay. With them, I am totally ‘Mum’ and ‘Grandma’. Being with them makes my long battle to recover myself, more than worthwhile.

The two ‘families’ create a harmonious whole

Maintenance of my freedom from a long-term eating disorder therefore is two-pronged. The eating disorder family connection helps to maintain ongoing healing and life discovery, and my children and grandchildren family connection helps me to experience growth moments that were missed while entrapped in my illness. Together the two parts synchronise and create a harmonious ‘whole self’.

Several other components top up my daily cup of wellbeing:

• Friends – I’m forever grateful to close friends who did not understand the vagaries of my illness but stayed beside me through the hard times, providing non-judgmental and loving guidance when the eating disorder voice rendered me a dysfunctional mess. Today these friendships continue to grow and deepen.
• My pet family – Maisie the English Staffordshire Terrier is my life coach and constant companion; Benji and Fizzie cats are always near, and ready for a cuddle.
• The community in which I live – face-to-face connection is vital in eating disorder recovery. I chat with neighbours and with people while taking daily walks with Maisie; I enjoy weekly visits to the local library to collect more books to read; I feel uplifted and inspired through leading a weekly writing group at a local community centre, and through involvement as a member with the local Rotary Club.
• Nature – walks beside the sea nurture my soul and mind in a spiritual way to start each new day. I enjoy tending to my flower garden and vegetable patch. There is something special about feeling the sun on one’s back, the breeze on one’s face, the earth in one’s hands. Harvesting flowers or vegetables to take inside my home to enjoy, or to share with others fills, my heart with gratitude.

Reach out for help today

If you are struggling with eating disorder symptoms, reach out for help today. You don’t have to give up your eating disorder.You just need help to turn it around so that you are in charge of your life.