Support and Love for ED – A Deeper Understanding

Initial Shock, Denial, Blame

When you find out that someone you love has an eating disorder, your initial response may include shock and denial. You’re thinking, What?? No, that’s impossible! How could they have an eating disorder and I didn’t know? If your loved one is a son or daughter, you might also be thinking, How could I let this happen? Is it my fault? Did I do something wrong? Am I a bad parent? This is the start of the difficult journey of learning support and love for ED.

What? Why? How?

You might have a lot of questions and be unsure of where to turn for answers. Eating disorders are serious and complex and the symptoms may vary significantly, depending on what kind of eating disorder your loved one is struggling with. Some people with eating disorders are eating too much, while others do not eat enough. Some people with eating disorders have smaller bodies, while others are in larger bodies. Other reasons for the variations in developing eating disorders range from trauma to diet culture. Even a seemingly innocent comment about a person’s body or eating habits can trigger an eating disorder.

Many parents are confused. It’s hard to understand, and sometimes we will never fully understand why someone in a family develops an eating disorder while others do not. It’s important to know that eating disorders are not a choice. They are Biopsychosocial diseases. There are societal factors such as: the inescapable images promoted by the media of impossible standards of beauty and thinness^[1], size and weight prejudice, an emphasis on dieting, and the belief that ideal bodies include only a narrow range of shapes and sizes^[2].

There are also genetic/biological factors. Individuals who have eating disorders may also struggle with anxiety, OCD or depression. Or, they may have a close family member with an eating disorder^[3]. Additional psychological risk factors include perfectionism, poor emotional regulation skills, and a rigid thinking style^[4].

It’s Not Your Fault

Parents do not cause eating disorders. This is an outdated belief that can be harmful to families and negatively impact a child or teen’s recovery^[5]. Dr. Janet Treasure from Maudsley Hospital in the UK said, Parents often have this guilt, assuming that because they were the person in charge of their offspring they may have done something wrong, but there’s no evidence for that, whatsoever^[6]. Eating disorders are mental disorders, like anxiety and depression, and are not simply a result of bad parenting.

Kitty Westin, the founder of the Anna Westin Foundation/The Emily Program stated, What parents need to know is: eating disorders are biologically based illnesses. They didn’t cause it. They need to let go of that guilt^[7]. Countless other doctors and eating disorder professionals concur that parents do not cause eating disorders. In fact, psychologists have seen improvements in the speed at which children and adolescents begin to recover when including parents in the treatment process^[8].

Parents Can be Very Important Contributors to Recovery if They:

• Focus on love and support for ED
• Enlist specialized helping professionals
• Seek out education about how eating disorders affect their kids
• Learn effective strategies for communicating and helping their kids
• Have a good and solid support system for themselves

What Parents Need to Know to increase Love And Support For ED

Ok, now you know that you shouldn’t blame yourself. Eating Disorders have a steep learning curve and you and your family will need to develop lots of tools to work towards recovery.^[9]. it is important to understand how to move forward and what you can do to support your child:

1. Don’t ask what if…
   You will never know, and you can’t control the past — only today.
2. You don’t need to know every detail and understand everything about the ED.
   You just have to be willing and able to respond now.
3. Use Person-First Language:
   • Do not say the anorexic person.
   • Instead, say a person with anorexia.
   • People are not defined by their diagnoses.
4. DO NOT:
   • Praise weight gain/loss.
   • Praise Appearance.
   • Praise Eating behaviors.
5. Remove The Stigma:
   Communicate that there is no shame in admitting that the eating disorder is a struggle. Lots of people struggle with these issues.
6. Avoid Overly Simplistic Solutions:
   If you tell someone with an ED to just stop or just eat, they are likely to feel frustrated, defensive, and misunderstood^[10].
7. Expect Them To Keep Up With Chores and Homework:
   Initially, you may feel like you are walking on eggshells, so as not to say or do the wrong thing to set off an ED behavior. But it’s important that you don’t let your child with an ED get away with not doing chores or doing their homework. Parents should calmly, clearly, consistently follow through^[11]. The ED should not be associated with any kind of reward or relief of work that is expected of their siblings and peers. The point is to make continuing the ED feel uncomfortable and emphasize that it will not allow them special treatment.
8. Practice Your Own Distress Tolerance:
   FEAST refers to distress tolerance as a parental superpower. As your children start to notice that you can handle anything emotionally, and are not going to lose your cool, they will calm down faster and be more trusting of you.^[12] Staying calm when a loved one is anxious and angry is not weak, passive, or uncaring. Know that it is just the opposite—it’s an active and powerful tool. It is also the most caring thing you can do for your children; showing them how to regulate their own emotions in moments of distress is a tool that will help them avoid being controlled by every passing emotion throughout their lives. They will grow up to be better partners, friends, and parents themselves someday.

Support And Love For ED Leads to Effective Communication:

Focus on using I observations instead of You observations. For example: I have noticed that you haven’t been eating breakfast with us. Or, I am worried about how much you have been running. When you use I statements like these, instead of saying things like You’re not eating! You’re exercising too much!, you can avoid putting the individual on the defensive.

Stick to the facts. People with EDs are likely to have strong emotions when you bring it up in discussions with them. It’s important that we don’t allow emotions to take over. If you can calmly point out factual observations (instead of opinions), you will be more successful in avoiding an argument.

Examples:

The person says, I need to lose 5 lbs.

Fact: You seem concerned about what you see on the scale.

Opinion: I think losing 5 lbs is too much.

I Observation: I have seen you run to the bathroom after meals. That makes me worried you might be making yourself throw up.

Statements invite communication more than a question.

Question: Why would you do that?

Statement: I’d like to understand why you do that

You may not agree with what they are saying or what they believe, but you can try to understand and learn more about it.

LISTEN and DESCRIBE (Instead of Interrogating)

• If you Question or Argue, you are Not Listening.
• Listen and describe what you hear.
• That is True Listening.

Examples:

Listening & Describing: You seem concerned about what you see on the scale

Interrogating: Why are you so obsessed with your weight?

How Will This Affect my Other Kids?

Parents often don’t want to tell their child’s siblings about the ED because they want to protect them from worrying. However, Kym Piekunka, Sibling Advocate and Educator, has found that the siblings typically know about the ED before the parents do^[13]. Even if they don’t know about the ED, they probably know something is wrong. Keeping it a secret from the siblings and telling them everything is fine when they clearly sense that things are not fine—this is actually scarier for the siblings than if you are open and honest with them^[14].

It’s important to keep communication open with siblings and give them a space to talk about their own feelings. Often, siblings are afraid to start these discussions because they can see that their parents are already stressed and they don’t want to make it worse, or compound the pain in the household^[15]. Involve the siblings so they can also learn to practice love and support for ED

With older children, it’s important to give them a safe space to express how they feel and ask any questions. Here are some statements that you can use to help young kids understand what it means when their sibling has an ED:

• Your sister/brother has trouble eating the way we’re supposed to stay healthy. We are all working together to help him/her learn to eat in a better way. We need food to have energy and stay healthy.
• Your sister/brother gets a little nervous or upset at breakfast/lunch/dinner. THIS IS NOT YOUR FAULT. We hope that this will get easier for them as they work with the people we found to help them.
• When your brother/sister has a hard time with eating, it can be scary for them. I know it might also be scary for you. Do you want to talk about anything that might be worrying you?

Parents, It’s Important to Experience Your Emotions:

Emotions can be compared to waves in the ocean. They build up, gaining intensity, and they seem even bigger. But eventually, like waves, emotions peak, crash and calm down. Emotions don’t last forever; they are always changing. As parents, we must learn how to ride the waves of our uncomfortable emotions…and model this skill for our children. We must ALLOW ourselves to experience emotions naturally without bottling them up. If we try to stop the emotional waves, we might get caught in the undertow.

Crying, anger, disbelief are all normal reactions to having a loved one who is struggling with an eating disorder. Practicing mindfulness with your emotions can be helpful. When you feel angry, where do you feel it in your body? What does it feel like? Does your heart quicken? Are your teeth and/or fists clenched? Often, emotions simply want to be felt. For example, when you take the time to feel your anger, the need to act on it may dissipate.

Connecting with Treatment

It’s important to help our loved ones connect with an eating disorder treatment program and/or mental health professionals who specialize in the treatment of eating disorders. Eating disorders have the highest mortality rate of any psychiatric illness^[16] and 1 in 20 people who have them will not survive. Recovery comes first. Everything else can wait^[17].

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Footnote Sources:
[1][2][3][4][8][9][10][11][16][17] – NEDA Parents Toolkit
[5][6][7] – FEAST 2009
[12] – FEAST 2020
[13][14][15][16] – FEAST Videos 2020