The powerful role of advocacy and community in eating disorder recovery
At age 41, I discovered that I had an eating disorder. I was a wife and mother, active in our community, with a demanding career and yet, somehow, I had no idea that most of my life had been consumed in a struggle with anorexia nervosa.
Why didn’t I notice the symptoms sooner?
Eating disorders are serious mental illnesses. Over the many years that my anorexia developed and impacted my life in varying ways, my mind became well trained at disordered thoughts and behaviors. Many rules developed within my head: only specific foods could be eaten (while an even greater list were avoided, and feared) at very rigid times of the day and in front of a very limited number of people. To introduce any variety in timing, circumstance or food product, meant inviting what I thought was a complete loss of control over my self.
Eating disorders = isolation
It’s no surprise that with all of these overwhelming rules around food and eating, life becomes isolated. After all, it’s much easier to avoid eating when there’s no one around to watch you and question your behavior. My disordered thoughts created shame around being observed eating or even just admitting to others that I did eat. Over many years of turning down invitations to lunch and dinner, friends and family backed away – I’m sure they felt confused and neglected by my avoidance. I would want to open up and say, “It’s not you that I’m avoiding, it’s the food.” But my disordered mind would not allow me to expose the truth – it was best left in the shadows where it would not be judged or changed.
Recovery from the eating disorder
Recovery is a challenging journey. You are facing your illness head on. When you’re not working with your treatment team, you’re working on your illness and your self on your own – confronting fears, breaking habits, and taking an honest and often painful look at your self, your past and your present. You are treating a highly complex and genetic mental illness, and trying to heal from its trauma to your body and mind. As you’re likely to imagine, this is hard and often lonely work.
Recovery from the isolation
There are times during recovery when solitude can be helpful – allowing for time and space to think about and process all that is uncovered in therapy. Keeping a diary to work through thoughts and feelings at this time can be extremely cathartic and useful as well. But then there are times when talking and sharing with others is critically important to the healing process. Friends, family members, local support groups and online eating disorder communities can offer an opportunity to share experiences and worries, and gain insight. We all need to feel a part of a community.
For me, this community bond emerged as the result of joining Twitter. I didn’t have much luck in finding a local support group, but I had reached the point in my recovery where I needed to feel that I could relate to others. I read Life Without Ed by Jenni Schaefer, and instantly felt a strong connection to Jenni and her story. In doing some research, I found that she was very active on Twitter and I decided to join and follow her, which lead me to her own community. It is through this group that I discovered the World Eating Disorders Day advocacy movement to create greater awareness around eating disorders on a global scale.
Joining the WED Day activist group was empowering. For the first time, I belonged to a group of people for whom eating disorders were the common connection. Whether one’s own illness, or that of a family member or loved one, or patient, we are all united by a cause that both affects us personally and yet is far bigger than any one of us, and where everyone understands eating disorders – the symptoms, the challenges and life implications, the urges and frailties, and the fears.
Advocacy has given me a sense of community, pride, friendship and connection. If you have not done so already, you too can find your way towards an advocacy project that speaks to your heart and mind, and that opens the door to a much-needed community in your life. A good place to start is WED Day, June 2, 2017.
Your story really hits home for me. Even though my eating disorder was started when l was very young it didn’t actually come out in full force until l hit forty. It was just “another thing” because l already had so many problems, over the years with depression, anxiety, crippling fears and phobias, l truly already thought l was crazy when one too many days of trying to cope tipped me into the hands of starvation and dramatic deathly weight loss. Just like anyone when they become ill with an eating disorder l didn’t believe it. I didn’t believe it because it was something that was keeping me alive,….and in denial . It was heartbreaking being away from my sons when they needed me, I found out very quickly who cared and who didn’t, but it was like l was walking around with a blindfold on … For the last twenty years l have been receiving treatment at many hospitals in different states and places. I had so much shame because as an adult it was expected even more of me to get my act together for my children, by family and staff but if l could of, of course l would of. I am even now ashamed to admit my age when it all erupted, but my many issues with food and eating and attending social events, even with family, has been given an answer now as to why I was like l was. Eating disorders are not about food and weight but l believe like with other illnesses there is a root cause somewhere . I know my eating disorder was “just another thing used to cope with the hidden darkness. A sense of belonging has been something that l have searched for for so long, still searching, still struggling but doing it anyway for it truly is the only way. Do or die. The cold hard facts. Thankyou so much for sharing your age, at times my age has meant l have been treated like an outcast but through learning to use my voice finally l realised through so many young people that age does not matter when it comes to having an eating disorder…….for we all just ‘ knew’ and could offer each other support and comfort but most of all hope as everyone is on a different part of the journey to finding ourselves. I am no different, l suffered then and I suffer now, advocacy is very important even for those who are not in the defined age group. A secret revealed, unpeeled and raw…..and it will all be ok in the end….and l live to pass on this message..
Thank you for commenting and I’m so glad my story had meaning for you, Karyn. It’s my hope to give others the feeling that they are understood and not alone on this journey, no matter what their age. I too struggled with the idea of being in my 40’s as I started recovery. As a mother, wife, employee, even coach, it felt like so much was at stake – that I needed to keep my disorder hidden, and recover fully and quickly. But advocacy and finding a strong community has given me the support, empowerment and education that I needed to face the realities of eating disorders and their many misconceptions.
You are not alone, you are understood, you are strong, and you are worth it. You are human and beautiful.
Thankyou for acknowledging and l love what you are doing