By CHRIS HILLIARD
Published: January 30, 2014
For many people, hearing recovery stories can be motivating. For others, they can be triggering. For that reason, we’re prefacing today’s blog with a heads up that this is a recovery story from someone who wanted to share her story with others. She’s a 50 something woman who we will refer to as “Jean”. My hope is that each of us can learn something from her perspective and experience. The bold text is the question. Jean’s answers in her words are below each question. We’ve removed some references to numbers (such as weights) to protect readers who might find that difficult to read. Please monitor your response as you read. If you find the story valuable, by all means read on. If not, maybe come back another day, or pass on this particular post. We are deeply grateful to Jean for sharing her story with us.
- What do you think contributed to the development of the eating disorder (ED)?
I was always “skinny” when I was little. When I was 10, we moved to Florida. I did not know anyone, stayed inside and ate, and gained weight. Relatives made comments about my weight and I started dieting, and basically never stopped.
- When did the ED start?
- At that time, did you recognize it as an ED?
I did not, but my mother was ahead of her time. She kept telling doctors that I was not eating.
- Were you aware of EDs at the time? What did you know about them?
Yes. My mother found a book called “The Enigma of Anorexia Nervosa”. I was aware that people with eating disorders hid the fact that they did not really eat and that many exercised to the point that it caused physical problems. I knew that they engaged in rigid patterns. Change to any of these patterns caused anxiety. Looking back, I displayed all these problems at 14, but did not acknowledge it. At times I would faint because my blood pressure was so low.
- When did you first become aware that the ED was something you wanted to change? What do you think led to this awareness?
I knew EDs were serious as a teenager, but I denied that I had an eating disorder. I did not acknowledge that I had an eating disorder until about 5 years ago. It was at that time that my supervisor talked to me privately. I did not respond well. I lashed out at him. He sat quietly and listened, but he would not “go away”. His approach was always nonthreatening. (He is a LPC.) After a while, I trusted him, and that is when I started to try to find a program that help me.
- How did you feel when you realized other people have similar experiences?
Back when I was at “my worst”, it did not make me feel any way in particular. I felt isolated. Now, I do not want others to go through the agony if any information I can contribute will help.
- Have you been in treatment before?
I have never actually been in a real treatment program. When I was finally willing to ask for help after my supervisor encouraged me to do so, I could not find a psychiatrist or LPC (Licensed Professional Counselor) who was willing to treat an adult with an eating disorder. The majority told me they treated adolescents. The two who treated adults were not taking new patients. I was not willing to enter a residential treatment center out of fear of losing my job, so I developed my own “cafeteria approach” plan.
- What is the most helpful part of your treatment?
My husband encourages me, and I have some strong supports. I have two friends (one is a LPC and the other is a psychologist). Neither sees me professionally, but they are there to talk when I have hard days.
- What for you has been the most difficult part of dealing with AN?
At my worst time, my lung collapsed when I was at very low weight. My mother had died a short time prior to that, and I was helping care for my father who broke his hip. The doctor in the ER yelled at me about my weight before they put in a chest tube. I knew my weight was a problem, but his screaming at me made me resist anyone’s attempt at helping me. They did send a dietitian to talk to me then. She was soft spoken, and I liked her. I felt excited about “getting better”. However, after she left, a psychiatrist came to the ICU to see me. He told me that I would die unless I entered residential treatment. I told him I had a job and needed to care for my father. He told me that I had no choice. I let him know I DID have a choice. He told me I had a lousy attitude and he might leave. I told him that I did not ask him to come and then added, “There’s the door. Don’t let it hit you on the way out.” I do NOT respond well to people yelling or threatening me. I quit asking for help and did not make an attempt at getting better for 2 years after this encounter.
- What sorts of things in your daily life exacerbate the difficulty of dealing with the ED?
Any social situation that involves food is hard for me. Christmas time is very difficult. Traveling is hard because it makes it harder to follow food and exercise rituals.
- What helps you?
Knowing that I have “safe” food to eat where I am going and that I can work out wherever I go. Also knowing that people around me will not try to “jam” food down my throat or tell me that I should be gaining weight faster.
- Does the eating disorder affect your sense of self?
- If so, how?
It is frustrating not to be “normal”. It is a sense of shame to have to acknowledge I have a disorder that is a mental disorder. That terminology is the reason I would not seek treatment. I feared losing my job and embarrassing my family.
- How has your life changed since you’ve been dealing with the ED?
I have hope, and I feel happy. My son is back in my life now. I love life again. I no longer have self-destructive thoughts. My husband is proud of me.
- What in your mind would represent “recovery” from the ED?
Recovery from ED would be never letting issues with weight impact decisions about what I do. Although I am at a fairly healthy weight now, I do not think I will ever be “cured”. I think of myself like an alcoholic. Just like if an alcoholic takes one drink, that cycle can start again; if I “skip” a meal or let my exercise increase again, that vicious cycle would start again. I know I will need to monitor myself every day.
I am doing well. I take one day at a time. I have gained weight. I still exercise daily, but I do not exercise as much. At my “worst”, I would get up as early as 2:30 in the morning so that I could finish my workout and then shower and go to work.
- Is there anything that you would like to see more research on?
Suicide rate in people with eating disorders, and severe food allergies among people with eating disorders.
- If you could tell your younger self something, what would it be?
You do not have to be perfect at everything, and it is okay to make mistakes.
- What about to other sufferers in the community?
Try to identify the source of stress or pain in your life. If possible, eliminate it. If the pain is from a failed relationship, try to reconcile with that person if possible. If that person does not want to accept your efforts, accept that and make “peace” with yourself. Recognize that you cannot change all things. Change what you can.
- If there were one thing that you would want other people to understand about EDs, what would it be?
It is an agonizing way to live. I am dumbfounded when people are ignorant enough to look at me (that is, when I was emaciated) and say, “I wish I had that problem.” I do not think so. There were many days I wanted to die, because I did not think I could go on.
- What about to the researchers or treatment teams?
Don’t use a one size fits all approach. You need programs for adults that will allow them to continue to work. Educate the general population so there is not so much shame with getting help.