By Alli Spotts-De Lazzer, M.A., LMFT #49842, LPCC #844, CEDS-S
Since 2011, I’ve facilitated a twice-monthly support and education group for family, friends, and carers of people with eating disorders. With permission, I am sharing their messages—what they want YOU to hear.
The following comes from people who identify as male and female, parents of children with eating disorders (including adolescent and adult children), and spouses of those with eating disorders.
- You’re not alone. You’re not the only one experiencing this.
- It’s not your fault.
- All those questions: “Why didn’t I know?” “Why didn’t I know sooner?” “Why couldn’t I be helpful?” “What did I do wrong?” It’s not your fault.
- You’ve got to plug into a network of help because you don’t know that you don’t know.
- It’s so isolating: the stigma and feeling the need to protect and respect your loved one’s privacy. You start with, “I can’t let anyone know in my circles.” Or friends and family you tell don’t understand, and that can be isolating, too. Find a safe place to connect and share, like a support group, where you can be completely open.
- When you first find a group, you’re probably in that first-time emotion and uncertainty. You’re on the roller coaster of emotions—from fear, tears, and terror to anger and resentment. It’s such a roller coaster. You’re first overloaded. You have permission not to know. It’s OK to be mad. It’s OK not to know what to know. Give yourself permission to feel all those emotions; all are good and valid.
- Know that through this journey with your loved one, it is very possible that you will be encouraged, by professionals, to do many things to help your loved one that don’t feel right and go against any logic or instinct you had in the past. Many times, those with experience will be right. The rule book has been changed. That being said, if your spidey senses are tingling because something just doesn’t seem right, then give yourself permission to be curious, explore that, and consider making a change. There are no easy answers or singular paths.
We’ve covered some of what fellow carers want you to know. Now, I want to share three points I’ve observed and believe can help you throughout loving someone with an eating disorder.
- Your love is an asset. However, you’ll need to learn how to apply it wisely, which may mean in different ways than you’re used to.
- Be careful of viewing struggles as your failures. Treatments fail or don’t match what someone needs.
- Stay open to learning—even when you feel you can’t possibly take in more.
1. Your love is an asset. However, you’ll need to learn how to apply it wisely, which may mean in different ways than you’re used to.
Deep love is so beautiful to witness in families. And, the eating disorder often requires a strategy for how you show love (e.g., how you accommodate wants and needs and how you support your person). What’s needed may be NOTHING like what any parent could ever know, expect, or prepare for.
Eating disorders can hold carers (you), hostage. Through love, family and friends can unwittingly empower the eating disorder. What I mean is this: it can feel like “If only I can say the right thing, it’ll be fixed;” “If only I can give enough, they’ll feel good enough, and it’ll be fixed;” “I’m so scared to trigger them, I’ll drive two hours to get them that one thing they say they’ll eat. I’ll do anything!” The loved one becomes compelled to get things right enough to fix the distress—or so they hope. These thoughts, impulses, and actions make sense but are not usually helpful when supporting people with eating disorders. Instead, these impulses and actions tend to fuel the eating disorder part of your loved one instead of calming it down.
Here’s a possible solution: Learn how to allow your love and energy to be used in deliberate ways. Depending on your family set up, Family-Based Treatment (FBT), Emotionally Focused Family Therapy (EFFT), or a qualified professional may help you plan how to best utilize your love to serve your person’s stabilization or recovery.
2. Be careful of viewing struggles as your failures. Treatments fail or don’t match what someone needs.
The remedy for healing any eating disorder is obviously not simple. Still, a lot can get you started on a positive path. Learn about eating disorders and what might help your and our loved one’s stage in the process. Maybe you take a caregiver class of EFFT to make sure your language is the most hearable and effective as it can be. People with eating disorders are notorious for putting people on eggshells; figure out how to get off the eggshells in a way that supports them. This won’t always enlist a loving, peaceful response from your person, and that can be good. When the eating disorder is in charge, IT (not your person) can rage if cornered or threatened. Sometimes, your person’s discomfort or anger is actually a sign you’re doing something different and healing.
Honestly, effectively helping someone can go against our intuition, which can frustrate loved ones and make them mistrust themselves. Carers tend to have to experiment until something resonates for your person’s healing. These are complicated illnesses that often sneak in and first appear as something positive in our society (e.g., an appearance of attention on health or nutrition). By the time anyone notices a problem, the illness has typically embedded itself. At that point, it will take work to surgically remove (a metaphor). And sadly, because eating disorders do tend to be individualized in some ways, even evidence-based treatment approaches might not prove to be effective.
Here’s an idea: Go to first-line treatments first and gather data (e.g., Cognitive Behavioral Therapy Enhanced “CBT-E” and FBT). Check that the chosen approach is a potential fit for your person’s stage of readiness and/or your family system. Then, as you go along, assess if there is desired change happening. Talk with your treatment professional(s) about progress and expectations because sometimes progress can look the opposite of what you’d expect.
Eating disorders can call for even more creative solutions beyond the limited amount that has been empirically tested. Please do not feel you have failed. Press on. Learn more. Interview more professionals. Read more. Your person with the eating disorder is probably incredibly smart and gifted; their disorder may require creativity, courage, and persistence.
3. Stay open to learning—even when you feel you can’t possibly take in more.
You may have times you want to stop educating yourself about these disorders and any accompanying co-occurring complications. OK. No one can be 100% all the time, or he/she/they will burn out. Besides, your person may also need you to take breaks from the intensity of learning and trying to help. You working harder than them can become an obstacle for the person learning to recover for themselves.
Supporting someone in healing from an eating disorder can be so very complicated. Yet, you’re probably called to help your person to learn how to save themselves. That said, you’ll need to take care of yourself along the way. When you look at your reflection, give compassion to the soul that stares back at you.
Here’s a bit of hope to hang onto: One of the first family-included treatments for eating disorders utilized structural family therapy. In this model, change is a base goal. Notice what happens when we add a piece of furniture in the most trafficked room in the house? The whole system changes its movement patterns automatically as a result of that single change. Shifts or doing things differently within a family system can move the whole system towards desired change.
Because of the sometimes life and death nature of eating disorders, you’ll want to pursue thoughtful, strategic changes. Those will probably involve a lot of learning and experiments. You’re not alone, you’re not the only one experiencing this, and people can help.
Alli Spotts-De Lazzer is a Licensed Marriage and Family Therapist, Licensed Professional Clinical Counselor, Certified Eating Disorders Specialist (CEDS) and iaedp-approved CEDS-Supervisor with a private practice in Studio City, Los Angeles. Since 2008, she’s been speaking and publishing on eating disorders and mental health. Alli recently authored the book, MeaningFULL: 23 Life-Changing Stories of Conquering Dieting, Weight, & Body Image Issues.