What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Anonymous. 

I recently lost my mother to a lifelong battle with anorexia. I am a young mom in my 30’s, and my entire life has been lived under the shadows of my mom’s mental illness. I watched someone I love and care about waste away farther with each life struggle, and I could do nothing as she suffered and slowly starved herself to death. Anorexia affected every aspect of my mother’s life, and so little is understood about this disease.

I want you to know that anorexia affects more than upper middle class, white, young girls that typically come to mind when one thinks of Anorexia. Anorexia crosses all gender, ages, religious and economic barriers. Approximately 5-20% of those affected will die from the disease. My mom rarely admitted she had a problem and never thought her illness would kill her. My mom never pursued treatment, but even if she had, as a low income single parent, who lived most of her life without health insurance, there would not have been many options available to her. When someone doesn’t want to get better, as is common in most Anorexic patients, the options for help become much more limited, especially when the patient is an uncooperative adult. One week before she died, my sister fought with the hospital for hours in order for them to admit my 70 pound mother, who was too weak to stand.

I want you to know that just as a cancer patient can’t choose to no longer have cancer, an anorexic patient can’t just choose to start eating and “get over” it. Anorexia is caused by a mental illness. The core of anorexia is control. When a patient’s life begins to feel out of control, severely limiting their intake becomes a coping mechanism for some.

The relationship that my mother and many anorexic patients have with food was very complex. While her goal was always to eat as few calories as possible, she hoarded extreme amounts of food, to the point that she would retrieve food from the dumpsters of grocery stores. Her house was literally filled with thousands of pounds of food, stored in crates in the bedrooms. While she couldn’t feed herself, she was driven to feed her children, pets and friends excessively. She spent her free time volunteering in food pantries or rescue missions. While a typical family might spend the extra free time between errands, hanging out at the park, we wandered the grocery stores. Her small and rundown house was filled with many high end kitchen appliances and cookbooks, while she did without many items that were needed.

Consequently, my mother’s illness had an extreme impact upon her children and those closest to her. I once read that many times an anorexic patient fails to properly bond with their children, because their relationship to food holds the highest place in their life. For me, this feels true. At the core of anorexia is the need to control and a drive for perfection. My mother had a good heart, and she loved us, but she loved food more. She was very difficult to please, as her illness drove her to be the ultimate perfectionist. For my entire life, I was always made to feel that whatever I had done was not good enough. Sadly, she also felt the same way. Her illness made her incredible controlling. As I became older, I quit trying so hard, and eventually pulled away from her, once I had my own children. Sometimes I regret that, but her illness forced me into a survival mode.

Obviously her food issues have affected me also. I have minimal memories of my mother ever eating a normal meal with her kids. Instead she would guzzle black coffee and eat lettuce in the kitchen, while us kids ate by ourselves at the table. I remember coming home from Kindergarten and doing exercise videos with my mom. When I was in the 5th grade, I watched a TV special about the life of Karen Carpenter, and I cried, knowing that this was my mother’s story and her future. My mother found her joy in feeding people, so I was overweight my entire childhood, a point which would bring great embarrassment upon my mother. But, in the complexity that is an anorexic mind, it was incredibly insulting to her if a person did not eat all of the food she prepared. As an adult, I have learned to eat and live healthy, but even though the rest of the world considers me tall and lean, I still feel fat. I have to tell myself that my perception in this area of my life is simply not accurate.

As much as I understand that my mother couldn’t just decide to eat, I still struggle with anger that she inflicted her starvation upon herself. In some ways I feel that this must be how a family member of someone lost to suicide must feel. I feel angry that I shouldn’t have to deal with her loss and the closure of her estate, and try to have to explain it to my young children. I feel jealous of the other people my age, who have healthy parents and strong relationships with their children and grandchildren. I feel cheated that I never got to know my mother when she was so full of potential, and instead lost my mom to the clutches of Anorexia years ago. I feel sad that now that she’s gone there is no hope of a regular relationship. I feel guilty that I did not do enough to help her. I feel heartbroken that her disease caused her to miss out on so much of the joy and happiness in life. And, I feel relieved that she is finally happy, and at peace, no longer suffering and angry from this disease. I understand that these are normal feelings and that I couldn’t have helped her.

Many times you cannot reason with a person suffering from Anorexia. She had every excuse as to why she couldn’t eat something. She had countless self-diagnosis to explain all the related pain and complications that not eating was causing her. My mother was brilliant just sick and sadly, Anorexia is the one disease in which those afflicted do not want to get better.

I want you to know that Anorexia shouldn’t be a shameful condition. It is not a character flaw, but a mental illness that can be tamed, and those afflicted can lead amazing lives.

For most of my life, no one would talk about the demons that my mom was facing, not her, not her family and generally not her doctors. Yes, Anorexia is a complicated illness, but if talking about it will help someone to seek treatment, then I will never shut up. And so, I will hold close to the pockets of happy memories and resolve to enjoy every second of life that is given me, in honor of my mother who had so much joy taken from her.