“I am sorry to say this, but because of what you did to your body, you will never be able to have kids.” I remember my doctor’s voice like it was yesterday. There I was sitting in his office at the age of 19 being told that because of my eating disorder – a disease that he said I brought upon myself – I would never be able to have children. I remember feeling a brief moment of sadness, followed by a fleeting moment of anger, and then total and complete numbness. This was just one more thing that my eating disorder would take from me.
For more than 10 years, I battled anorexia, bulimia, and binge eating disorder. I nearly lost my life several times. Eating disorders have the highest lethality rate among all psychiatric disorders. Despite what the doctor said, I didn’t chose to have an eating disorder. I never looked out the window and said, “It’s a beautiful day in South Florida today, I think I will have an eating disorder.” Eating disorders are complex biopsychosocial illnesses – not lifestyle choices. Many contributing factors including genetics (eating disorders run in my family), anxiety, perfectionism, and pressure to lose weight as part of the ballet world came together to create the perfect storm that led to my eating disorder.
My eating disorder stole almost everything from my life. It robbed me of relationships, school years, memories, and laughter. I suffered in silence and alone for so many years.
I vividly remember the moment that inspired my recovery. At the age of 21, the pain of living with my disease became greater than my fear of change. I had just finished a late night binge and all I could think about was that I was sick and tired of being sick and tired. I wanted to live and not just barely survive. I scrambled for resources and searched everywhere for people that could help me. My insurance wouldn’t pay for my treatment and my parents didn’t have the monetary resources. I pieced together whatever support I could find to help me through this journey.
The next hurdle was overcoming my vision of what my recovery should look like; of course, it was one of perfection. Since I have always lived my life in polar opposites, black or white, all or nothing, I believed that I was either 100% in my eating disorder or 100% in recovery. It was my own expectations of recovery (what I should be doing and how fast I should be recovering), that often set me up to trip and fall. I would use those trips and falls as reasons to keep beating myself up and acting out with unhealthy behaviors. Recovery is not about the trips and falls; it is about what happens after you pick yourself up. It’s about getting back on your feet, dusting yourself off, and moving forward.
Recovery is the most difficult thing I have ever done in my life. It is also the best thing I ever did. I did not recover to utopia, I recovered back to life and freedom. Recovery is messy and happens one step at a time. I never would have imagined that I could live my life beyond my eating disorder. I was certain I was the one who would never get better and the person who didn’t deserve much of anything. I thought I was the exception to the rule. I was wrong.
My recovery has been filled with many gifts. In October 2000, I founded The Alliance for Eating Disorders Awareness, a nonprofit organization dedicated to the outreach, education, and advocacy of eating disorders, wrote a book, and used my voice to advocate for change through the Eating Disorders Coalition. I healed and solidified relationships with my family and friends, and met and married the love of my life.
Johanna and Annabelle
What I didn’t fully realize until recently, seventeen years into my journey, is just when you think you have reached the end of a chapter, another chapter, one that you could never imagine possible, begins. In late 2015, at the age of 37, 18 years after being told that I would never have children, I found out that I was pregnant. On July 22, 2016, I gave birth to Annabelle, a healthy and amazing baby girl. Looking into her eyes, reminds me that true healing does happen. So, during National Women’s Health Week 2017, I leave you with this: If you are currently struggling, please know that it does get better. You are not the exception. Help is available, recovery is possible, and you deserve every gift that comes with it.
Johanna Kandel is the Founder and CEO of The Alliance for Eating Disorders Awareness, Author of Life Beyond Your Eating Disorder (Harlequin), and Immediate Past President of the Eating Disorders Coalition. After battling various eating disorders for more than 10 years, she has dedicated the past 17 years to raising awareness, education, and early intervention of eating disorders.
