One of the things I have always found curious about eating disorders is that they seem to be the only mental illness which is given a distinct name and even a separate identity. Only is probably too strong a characterization, there are likely those who give names to other illnesses as well, but eating disorders would win the prize for the highest percentage in that category. We are all certainly familiar with the term ED, which often doesn’t just abbreviate Eating Disorder, but is often referred to as “Ed” (as in short for Edward). I have also seen “Anorexia” used not just to define a particular aspect of an eating disorder, but as a dangerous bitch that whispers bad messages to our child and attempts to take their life.
I personally didn’t choose to give the eating disorder a particular name for a variety of reasons (see “To Name It or Not to Name It”), but I see the logic in those who do choose to do so. Where I disagree with giving a specific name and identity to an eating disorder is when that eating disorder persona becomes the scapegoat and the excuse for behavior that otherwise would not be tolerated. It is when “Ed” or “Anorexia” is permitted to behave in ways that Max or Susie would not. So, what exactly are you referring to Christina, you ask? I am referring to the times that I have heard of kids and even adults screaming at their care providers, sometimes in the most colorful language, berating them and calling them the most hurtful names. I am referring to the throwing of food and objects, sometimes at the parent or careprovider. I am even referring to pushing or striking a parent or care provider. I have seen this behavior excused both at in-person and on-line support groups as “just the eating disorder talking”. I have heard statements such as “let this go, you know it isn’t them talking”, “the eating disorder is loud and proud today”, and “just walk away and ignore it because if you don’t Ed or Anorexia will think that they have won”. I am sure that this will sound controversial, but if nothing more than walking away occurs each time this behavior is displayed, I would argue that “Ed” and “Anorexia” did win. They won the right to be abusive toward their caregiver and cast the blame outside of themselves and that is really what this post is about; the rights and needs of caregivers. Caregivers of children and loved ones with eating disorders have a lot to manage. Being the team lead, managing the rest of the family’s needs, and the stress and worry over the health of your starving child/loved one is enough to contend with; abuse should not be on that list. I am assuming that we can all agree that physical abuse is something that should never be tolerated, but what about verbal abuse?
Those hurtful names, the berating, even the throwing of food and objects in response to something you said or did is abusive. Most caregivers are practicing Family Based Treatment (FBT) at the present time. FBT encourages the team lead (caregiver) to be sitting at the table to ensure that food is eaten and to teach and set the example of common mealtime behavior. It demonstrates the concept of relaxing conversation during mealtime (focused on other topics and not the food served), not rushing or prolonging meals, and finishing what is served. Common mealtime behavior does not include being called ugly names or seeing a bowl of ice cream fly by your head. If in the practice of FBT you would insist, with gentle encouragement, but insist none-the-less, that the meal be completed, why would that same insistence not also include the absence of abusive behavior? This behavior is not tolerated on an inpatient unit, why should it be tolerated in your home?
I heard a very good group leader, when this behavior was broached in a support group; ask if this same behavior is exhibited when having meals at someone else’s home or whether this behavior occurred around friends, co-workers, and other relatives in general. The answer, with very few exceptions, was no. The logical question then follows: if it is able to be controlled in those settings, why is it not expected that it is controlled in the home with the caregiver? The idea is often presented that the eating disorder causes brain changes (and therefore behavior changes) and this may well be the truth; however, if it was the case that those changes brought about an inability for any self-control at all it would likely be the same in other settings, not just at home. I would reiterate that verbally or physically abusing the staff (caretakers) in an inpatient setting (the highest level of care) isn’t tolerated.
The first reason I believe this to be a bad idea is that it sets a precedent. Once a precedent is set, it isn’t often reversed. Since this is about caregivers I will address them first. The precedent here is that you can or should be treated this way. It is very easy to start accepting this kind of treatment as normal, sometimes even becoming so accustomed and numb to it that you no longer recognize it for the abuse that it is. It is easy after hearing over and over again how your actions and reactions cause the behavior in question or were unjust in some way that you start feeling guilty, doubting your abilities, and believe that you may, in fact, really be deserving of this sort of treatment. This can lead to a loss of self-confidence and depression. This precedent isn’t just limited to the caregiver either. It sets the stage for the child or adult with the eating disorder to continue to behave this way. The lack of consequences and boundaries can be very reinforcing and can foster the idea that their behavior is justified. It puts the responsibility outside of them and provides a convenient excuse not to exercise self-control. It also sets the precedent for other siblings who observe this and learn this behavior as well. Very often this affects their behavior also and they do not learn to view and treat mom or dad with the respect that they should.
The family is a microcosm of the outside world; a world in which the eating disorder sufferer will one day have to negotiate through employment, interpersonal relationships, college, marriage, etc. These types of behaviors will most definitely not be tolerated in these settings. By failing to correct them in the home, it can be quite shocking when “Ed” or “Anorexia” is not accepted as the reason for an unkind or inappropriate outburst and there are very real consequences such as the loss of a job, school, or the end of a relationship.
By respecting your own value and acknowledging your own needs you communicate the message of self-worth to your child and others through example. That example sets boundaries and it is OK for a caregiver to have boundaries and to expect that their caretaking role would not include abusive behavior of any kind.
Teaching self-control and refusing to tolerate abusive behavior models that sense of reality which is often transient with eating disorders. It is a model of socially acceptable behavior and helps keep them grounded in a world where distortions are the rule rather than the exception. It conveys a sense of self to see you respecting not only your body, but your feelings as well and demanding that same respect from others, even your closest loved ones. It also conveys the necessity of accepting responsibility for your own behavior and not seeing it as the behavior of another entity that isn’t really a separate person.
The other concern I have when excusing or ignoring abusive behavior is that it perpetuates the stigma that people with mental illnesses have no self-control. This stigma has been around from the first day that mental illness was recognized and still persists in various forms to this day. It has painted a very unflattering picture of those affected as violent, lazy, out of control, manipulative, and just plain abnormal. It has promoted a culture of misunderstanding and fear and nowhere does the misnomer of lack of self-control and manipulation rear its ugly head than with eating disorders. While the true intention of every parent or caregiver in excusing the behaviors described above is to be helpful and compassionate, I am not so sure that it is. I am not so sure that it is not tacitly perpetuating the fallacy that I just described. When we sit at the dinner table encouraging the completion of a meal, we are communicating that we believe that they are capable of doing this. We are communicating that they do have the ability to resist that “eating disorder voice” and take charge of their health. When we then ignore or excuse behavior that is verbally abusive or destructive as coming from outside of them, are we then undermining that message that they are in control. If we are saying on the one hand, “you are not your illness” and it doesn’t define or control you and on the other telling them that their illness is responsible for all unpleasant behaviors, how is that not a contradictory message?
I am in no way suggesting that we should pounce on our loved ones when they are angry or say and do hurtful things. With the exception of a situation that is dangerous and someone could be hurt, walking away and cooling off is a very reasonable strategy. No one truly listens to what the other is saying when we are boiling with anger and shouting at each other. Nor am I suggesting that there are not times when ignoring a particular comment or behavior isn’t the best course of action. Verbal abuse and the behaviors I described above that are occurring more than as an isolated incident shouldn’t be ignored. They should be discussed when both of you are calm and can listen to each other.
It is certainly understandable that anyone suffering with any illness is going to feel anger and irritability. There needs to be a positive outlet for that. Some coping strategies might include:
Take a Time Out: As stated above, nothing is accomplished when emotions are running very high. Cool off first. Since the conflict is most likely about food, it often occurs during a meal. You are supervising meals and obviously cannot just walk away, so suggest changing the subject or sitting quietly for the rest of the meal. If possible, have your spouse or another adult step in and finish supervising.
Meet with your Treatment Team: Request a family meeting with your therapist to discuss these behaviors and develop a strategy for dealing with them. Your loved one’s therapist needs to know these things to assist the family and also to work on them in individual therapy.
Write it down: Before talking each of you write down what happened from your individual perspectives. Be sure to listen to what each of you felt was happening at the time. It doesn’t mean that you agree with the abusive language, etc., but it is important for both of you to know how you each perceived things. There may be valuable information there.
Decide the consequences with your spouse: This, of course, applies to parents only. Talk with your spouse about the consequences of your child’s behavior and decide them together before talking with your child.
Make the boundaries clear: Be clear that abusive language or behavior will not be tolerated and what the consequences will be. Outline what the boundaries are and what is and is not an acceptable way to express their feelings to you.
Be Consistent: Make sure that once you define the boundaries of acceptable behavior and the consequences of abusive speech or behavior you stick to them. Get support from your spouse in keeping the boundaries and consequences clear and carrying them out consistently. Make sure that both of you are setting and carrying out the plan and that one parent isn’t always the “rule enforcer”.
Don’t be punitive: Make sure that there is a way out. While consequences are appropriate, after they are given and carried out, move on. Constant reminders of past behavior is not going to be productive. Be open to repairing your relationship and moving forward.
Work together to develop a plan: Work together to develop a plan for handling negative emotions. Sometimes, when calm, you can identify “flashpoints”. They could be certain times of the day that might be difficult, particular situations, increased anxiety at mealtime, etc. They will vary with each family and caregivers can experience them too. Knowing what they are can be helpful in avoiding a conflict.
Encourage taking responsibility for behavior: Taking responsibility for behavior is important. I say encourage because while you can force someone to apologize, you cannot force them to mean it or even believe it was necessary. What you can do is hold them accountable for their behavior. While “Ed” or “Anorexia” may well have caused tremendous frustration, sadness, and anger, “Max or Susie” actually said the hurtful words, swore at you, threw an object at you, or threw the bowl of ice cream across the room. Max and Susie should held responsible.
Whether you title is mom, dad, spouse, girlfriend, boyfriend, or friend you do not deserve to be treated unkindly while caring for your loved one. Verbal abuse or any abusive behavior is not “just part of the job” of a caregiver. If that is coming with the job it is time to redefine the job description. You have a right to be treated with respect and you have a right to expect this from whoever you are caring for. Caregivers are also under tremendous stress and this stress can have a very negative impact on their health as well. Any measures to reduce your own stress, including setting boundaries about how you are treated and spoken to, are reasonable, necessary, and set a positive example to those you care for.