Of all of the ups and downs we have experienced with our son’s illness; the hospitalization and the setbacks, one of the hardest is hearing my son apologize for his condition. A recent experience really brought to light for me just how much my son feels he has to apologize for his eating disorder. It is as if he is saying, " I have an eating disorder, please accept me and love me anyway.” It is as if he should be grateful that anyone could care for him and want him as a friend or a spouse.
It is almost as if his illness made him undeserving of those things and that he is lucky if someone feels differently. It makes him either hide it altogether or feel that he has to tell it right away so people can decide whether he is worth befriending. What a choice! As a mom, this was very hard to watch.
Our son is not his illness.
I don’t think that this is entirely his fault, either. Recently, he was telling me of an experience with relatives of his fiance. While he was not with her, a scenario was proposed to her asking what would happen if they had a baby and she had to be away at a family emergency. The scenario left him alone with the child and unable to go to the gym and exercise. The gist was that he would either abandon the child in order to get to the gym, or his wife would not be able to be away from home.
Bottom line: he can’t control himself. She was also presented with the ‘what if a setback occurs’.
Why would you want to deal with that?
Wouldn’t it get very old and irritating to have to deal with his dietary guidelines while recovering from a setback?
I asked my son how he responded. His answer was exactly what I expected. He was put on the defensive and he responded by defending himself. In this case defending himself was apologizing for his eating disorder. It was “understanding” why these worries would come up and it meant the potential of a lifetime spent proving himself. I was offended. I wondered if he had a medical illness or condition would his fitness as a husband and father be so readily questioned.
Would there be the same doubts about wanting to deal with a setback or flare-up and the dietary changes that it would entail if we were talking about diabetes, high cholesterol, or high blood pressure?
Would those symptoms seem so distasteful?
I doubt they would because they are considered part of human frailty. We didn’t cause the illness and we can’t always prevent the symptoms. It is accepted that these things are not completely within our control and, even with regular medical treatment, flare-ups can occur.
Illness or conditions that fall under the heading of mental illnesses are still treated very differently. They are often thought of as something that we did; something that we can/should control or something that renders us totally out of control. There is often no middle ground. The symptoms are frequently treated with disdain and fear. The idea that my son would leave a baby unattended or put his need to exercise above the needs of his wife suggests that he has no self-control, not to mention the suggestion that he is selfish.
Eating disorders are often viewed as selfish. They are still many times viewed not as a disorder, not as something that the sufferer didn’t want or ask for, but as something vain and self-centered and lacking in any self-control.
The idea that someone with a mental illness cannot control themselves still stigmatizes and it still hurts.
The scenario presented to our son’s fiance was intended to cause doubt. The tone clearly suggested a bias that I don’t think would have existed with other illnesses. There is a lot of evidence that a poor diet and lack of exercise contributes to Type II Diabetes and heart disease.
The fact is that there are many other factors in play. No one suffering with these diseases asked for them and a lack of self-control didn't cause them. Imagine a scenario where a woman is asked about her fiance's diabetes. Imagine he had eaten a very poor diet prior to this diagnosis and is suddenly peppered with questions such as:
What if he can’t control his love for junk food and his diabetes worsens?
Suppose his kidneys fail and he can’t work and support his family?
How would you handle dialysis?
Why would you want to have to deal with his dietary restrictions?
What if the question of having to work within the dietary restrictions of high cholesterol, high blood pressure, heart disease, or kidney disease was called into question?
The person placed on the defensive would likely, in this case, be the person asking the questions. How unfair it would be to suggest rejecting someone for something outside of their control. Eating disorders are not ranked the same way. The person with the eating disorder is squarely on the defense.
As a society we have certain comfort zones. We are comfortable talking about health as it relates to medical illness. You can go to a restaurant and request a special diet for a whole host of reasons that would go almost completely unnoticed. Religious, cultural, personal preference, objection to animal products, and physical health all fit the comfort zone. You can shake down the menu with the scrutiny of a detective because you want to find low carb, low cholesterol, low sodium, or low calorie for any number of reasons and little, if any, eyebrows will be raised. In fact, it might lead to interesting dinner conversation.
Reveal that you need a special diet because you have an eating disorder and require certain portion sizes, levels of protein, or variety with your meal and the reaction is likely to be one of discomfort. Scrutinize the menu because you see a lot of “fear foods” on it, because you are worried about the portions being too big and feeling full, because you don't know the caloric content of the meal or how it is prepared and you will likely find awkward, rather than interesting, dinner conversation.
Try saying any of the above as a male and the experience will likely be even more awkward.
My son seemed shocked that I was offended. I am not out of touch with reality. I am aware that there would be questions about the eating disorder and whether it is being treated. That would be a normal question with any illness. Wanting details and some information and reassurance is also normal. All parents want their children to know what they are getting into when it comes to marriage and questions are expected.
There are no guarantees in this life.
Whether your condition is diabetes, heart disease, or arthritis, flare-ups and setbacks can, and probably will, occur. With good medical treatment and follow-up these flare-ups are usually managed and people generally lead very normal lives.
Mental illness isn’t different. Flare-ups and setbacks can and do occur. They are also managed with good follow-up and treatment and people also lead very normal lives. Any illness or condition should surely be shared with someone you intend to spend the rest of your life with, but beyond that it should be regarded as your own business. It should be something that you choose to share, or not share, with people that you meet. It shouldn’t be the feared “secret”. It shouldn’t be a game changer and it shouldn’t define who you are.
There shouldn’t ever be the need to apologize for human frailty, regardless of what form it takes. It is, after all, human and none of us escapes the human condition. Mental illness and addiction isn’t something people ask for and they didn’t knowingly “do” something to cause it. More and more evidence points to genetics just as many medical illnesses do. The idea that we make a diabetic apologize for his diabetes is ridiculous and so should be the idea of apologizing for an eating disorder, depression, OCD, bipolar disorder, schizophrenia, or any other illness.
Our son is funny, loving, kind, caring, responsible, hard-working, and he has an eating disorder. It is only a part of his life. The diabetic is not his diabetes and our son is not, and never will be, his eating disorder.
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Christina Leigh has been writing most of her life just for the love of writing. At the age of 21, her oldest son nearly died of Anorexia Nervosa. The disease had a very insidious onset and, despite many attempts, most doctors viewed him as an over-zealous jock rather than identifying that he had an eating disorder. After he was well into recovery, she realized what a tremendous toll this illness took on her entire family. The collateral damage was tremendous and would take awhile to repair.
Today, Christina writes about this disease through the eyes of a mother and a caregiver. She hopes that her experience can help other caregivers and their families cope with this devastating illness and that, perhaps, caregivers in all categories may find something helpful as well.
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