During our long journey through our son’s eating disorder, I have found that people crave reasons. They are mostly looking for reasons as to why this couldn’t happen to them or to their loved ones. I think that this is pretty normal behavior and, I must admit, I have done the same thing many times in my life. If someone died of a scary disease, was the victim of a crime, a natural disaster, an accident, I would look for reasons why. What was unique about that person that would have increased the chances of it happening to them and not me or mine. I
guess we all need reassurance to deal with the uncertainties of life.
I found this to be so much the case during our son’s illness. We scared people. When you don’t fit into the mold, the expected, the obvious explanation, people are frightened because they themselves and their loved ones are suddenly vulnerable. Lung cancer has always scared me. Whenever I heard that someone had this disease, I would always ask if they were a smoker. Why? Not because I knew that this was the leading cause of the disease, but because I wanted reassurance that there was, in fact, a reason. There was a risk factor my family didn’t have, an explanation that didn’t fit my circumstances. It brought a guilty relief.
When it became very obvious to everyone that our son had an eating disorder we were largely avoided. He was avoided personally and we were avoided as a family. We live in a small town and many of my other children play sports. I would see the same parents over and over again on various teams. Our son would sometimes come to the games and people would see him and stare at him. There were comments on how “skinny” he was and then there would be questions, or rather statements, as to the cause of it. Most of the time it would be that they knew he was a runner and, of course, all runners are pretty skinny. Or perhaps it was the adjustment to college life and having to eat on a “different” schedule. But most of the time, he just wasn’t mentioned at all. It was as if he wasn’t even there. I understood that many people were being polite and were trying not to pry into our personal business and that was appreciated. Even both sides of our family avoided the conversation and didn’t ask any questions though. Even some of them avoided him whenever they could. It was very evident by the discomfort in body language, the questions quickly answered by the questioner, and the often abrupt changing of the subject that people were very uncomfortable with our son’s condition. What really stood out is that not once did anyone suggest an eating disorder. Was the reason that no one really ever considered it? Maybe, but their obvious discomfort and avoidance suggest otherwise.
Most people have come to define eating disorders as largely an illness specific to teenage girls. Once that is accepted and incorporated as the normal definition, it becomes something easy to categorize and therefore predictable. It won’t take you by surprise. Parents educate their daughters, schools educate their girls, and society has put it on the radar. We are given a sense of empowerment by taking the element of surprise away from the illness. So what happens when the victim falls outside of that neat little box that we have placed our expectations in? What happens is that people no longer know how to react. Things are no longer predictable and that lack of predictability leaves people feeling confused, scared, and vulnerable.
After our son was released from the hospital and his anorexia had become fairly well known through social media and friends of his brothers and sisters, the questions were really about looking for reasons and reassurance. He was not most people’s image of the “typical” eating disorder patient. Statements about how much he loved his curly hair (therefore he must be vain), how training for marathons often causes anorexia (he hated running and never trained for a marathon), and the intensity of teenage relationships were often presented as possible explanations. Questions were sometimes asked, but more often than not, people made statements. You could hear the rationalizations turning in their head and their discomfort was often visible. When no obvious answers were available, stories got a life of their own. He must have been physically or sexually abused (he wasn’t), bullied at school (he was home schooled), got it because he was home schooled and therefore felt “different” (he had lots of friends and was quite social), it was inherited (he is first generation eating disorder), the pressure of college was too much for him. The list was quite extensive.
To be honest, I really did understand people’s fears and I wasn’t offended by them. Most people weren’t intending to be unkind. What was hurtful, though, was the speculation that really wasn’t just another frightened parent seeking reassurance that their children were “safe”. The unkind remarks made to my other children had a profound effect on them. The rumors hurt them and they hurt our son too.
The fact that our son didn’t fit any of the stereotypes made getting support very difficult. Our true friends were supportive, of course, but aside from that there really wasn’t very much support out there for someone who didn’t fit the mold. There were support groups available, but they were comprised mostly of teenage girls and women and he didn’t feel comfortable sharing his experience because it heightened his feelings of being different. It forced us all underground and we became part of the culture of hiding, of almost apologizing for his illness. We were looking for reasons too. It is hard not to have a reason or an explanation. Accepting that sometimes things happen and we don’t know why is a very bitter pill to swallow and some of us never do. Blame is such a band-aid, but it rarely heals the wound or provides real reassurance. Even so, we keep looking.
I wonder how many boys and men have been forced underground because it just isn’t acceptable for a male to have a “girls” disease. How many males have been pushed underground because of fear and misunderstanding? How many parents of those males have been isolated and alone because they didn’t fit? I have learned not to be part of the culture of denial and false reassurance any longer. Our family still faces the reality that we scare people, so people just don’t talk about it. Male eating disorders are becoming more recognized; however, there still is not much support for patients like our son or our family and that can be very lonely at times.