I Supported My Daughter through Eating Disorder Recovery. Here Are 10 Things I Think All Caregivers Should Know
By Kristi, Equip Family Mentor
When I agreed to write about lived experience supporting a loved one with an eating disorder, I didn’t anticipate it would be all that difficult. Getting someone into and through treatment is a challenge, absolutely, but considering my career began in journalism and I now spend five days per week mentoring caregivers on a recovery journey with their own loved ones… well, 800-1,500 words on a topic I’m passionate about shouldn’t be too complicated, right?
Not exactly. If I had taken a stream of consciousness approach at writing this, I’d be well on my way to writing an entire book at this point. Instead, I’ve over-thought and started over so many times that I’ve had to radically accept the guilt of writer’s block and apologize for missed deadlines. Thanks to some box breathing, taking a step back and (re-)checking the facts, I’ve finally arrived at a place of clarity: I’ve been overwhelmed by the extent of what could be shared because my perspective of supporting a loved one has dramatically shifted from one experience to many.
After supporting my then-teenage daughter through anorexia recovery, I made an unexpected career move and became a family mentor at Equip. Since then, I’ve supported hundreds of families as they supported their own loved ones through eating disorder treatment.
Rather than focusing on a single recovery journey, the following is a list of 10 things I’ve learned from the lived experiences of supporting loved ones with an eating disorder:
- It cannot be said enough that caregivers do NOT cause their loved one to have an eating disorder. I’m constantly astonished by the number of supports who still believe otherwise based on what they have heard from sources trusted to be eating disorder-informed. Similarly, most supports carry a lot of guilt for not recognizing the signs of an eating disorder earlier — or, of those who actually do voice concern, many are met with “don’t worry, it’s just a phase.” Helping caregivers to abandon the guilt in exchange for greater confidence makes a world of difference in the progression of treatment.
- When eating disorder caregivers are in a position to temporarily assume ownership of all decisions related to food (ie: meal/snack planning, preparation, plating, etc.), this is genuinely one of the greatest gifts a support person can offer. This so-called “gift” won’t be met with immediate gratification, of course (quite the opposite!), but as caregivers become trusted to provide structure and ensure nutritional needs are being met, the more peace a loved one begins to experience from the constant bullying of their own brain. For the first time in months if not years, headspace begins to exist for thoughts (and eventually conversations) unrelated to food.
- Making an effort to say all of the “right” vs. “wrong” things as an eating disorder caregiver is admirable in theory, but keep in mind that eating disorders are brain disorders. Even if a loved one were to share a script of what to say when X, Y or Z occurs, moments of distress come from a place of high emotion, not logic. Fighting an emotional fire with added feelings and/or facts will end in an explosion or implosion — neither of which works in favor of conserving the energy of caregivers. Share a few words of validation and stay present, but otherwise stop talking. Less is more, really.
- Treatment teams do not exist to judge the efforts of caregivers or of those being treated. Yes, recommendations are made based on evidence of what has proven effective with different diagnoses, modalities, ages, life stages, etc., but what works for one family or in one situation easily varies. “Right” is more about figuring out what proves effective for continued progress, based on trial and error, and teams respect that caregivers know their loved one best.
- Eating disorder caregivers supporting a loved one between the ages of 18-24(ish) hold a special place in my heart, because it can feel like two wars are raging at once, even though everyone is fighting for the same outcome. On one side is the young adult, desperately seeking autonomy and the ability to independently live their life — and on the other side are parents (often still providing the financial support for said independence) who just want to ensure their loved one is positioned to live free of an eating disorder and to thrive as an adult. Eating disorders love to position parents as the controlling opponent, but nothing could be further from the truth.
- It’s vital to ensure that you support yourself as well as your loved one. Whatever you are going through on any given day, none of it is fair and I don’t wish the recovery journey on anyone, ever. As if figuring out how to be supportive of a loved one isn’t enough, suddenly there’s a job change, hurricane, sickness of another family member, new baby on the way, difference in opinion between parents or your escalating anxiety about your loved one’s anxiety. It is well worth caregivers exploring and joining support groups specifically for those going through eating disorders — in person, by video or a social media platform — as you gain a community that understands eating disorders along with awareness that you are never as alone as it feels. Lived experience of one leads to lived experience of others, and this will help get you through the rough days.
- Social media can be difficult for caregivers, too. We all want our loved ones to be living their best life, and when the here and now doesn’t look like the lives we see posted of family, friends and co-workers, it’s easy to forget that treatment is t-e-m-p-o-r-a-r-y. Whether the journey has been two months or you’ve never known your loved one without an eating disorder, do not lose sight of the recovery goals. None of this is easy but the end result is worth it.
- If you haven’t found or created a treatment team you trust and can be transparent with, keep working to establish this. Ask questions, voice your concerns, challenge the goals, request resources, make recommendations, and inquire about different approaches. Therapists, dietitians and medical providers do not decide to specialize in eating disorders because it’s an easy day job — they do this to help others get through it. If the needs of you and/or your loved one aren’t being addressed, SPEAK UP so that adjustments can be made. The more a team knows, the more treatment can be customized around specific needs.
- Ask for — AND be willing to accept — help. Meal preparation, childcare, carpools, school counselors, grocery delivery, fast food, a massage, pet walking, flexible work schedule, sleep, payment arrangement, doing the dishes, recipe recommendations, a 24-hour escape… you get the idea. So many more people than you realize are willing to help, but they don’t know what to offer unless you ask.
- Constantly remind yourself that your loved one is NOT their eating disorder. The eating disorder has hijacked their brain, it’s manipulative and it will continue to show up in different ways… until eventually it doesn’t. Someday, perhaps already, your loved one will thank you, though we already know that’s not why you’re doing this. All you really want is to see them happy and thriving — and you will.
You've Got This!
Each time I’m assigned to the team of a new patient at Equip, a new journey toward recovery begins to unfold. I see the fear and I know the exhaustion of the caregivers I get to meet with, but I also have an advantage. From day one, I already know they will get through this — so I start looking forward to the day of our final session knowing we’ll get to celebrate just how far they have come and how much has changed. The only thing you can actually do wrong is to give up, and all of us know that’s not an option or you wouldn’t be on this website. Hang in there.
