What I Wish My Family Had Known When I Was Diagnosed With an Eating Disorder: How to Support Loved Ones Beginning Their Recovery Journeys.

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Every few weeks or so, I get an email, text, or private message that goes something like this:

“My son/daughter/boyfriend/girlfriend/friend has an eating disorder.
I don’t know what to do.
I’m scared.
Help.”

Reading this always makes my heart drop. I know what it’s like to feel that fear: the fear that your loved one could slip away from you at any moment, the fear that they are battling a monster you know nothing about, the fear that no matter what you do or say it will be “wrong” or that they’re suffering is “your fault.” Eating disorders are absolute hell for the person going through them, but for those supporting the sufferer, the pain can be just as visceral and oftentimes just as overwhelming, if only in different ways.

Since I began writing publicly about my own recovery from anorexia, I’ve received many desperate pleas for help in understanding this complicated and under-discussed disease. More often than not, eating disorder diagnoses take family and friends by total surprise, due to the secretive nature of the condition, the lack of diverse representation in popular media of sufferers of the disease, or the subconsciously willful ignorance of the problem at hand (sometimes, it seems, it’s easier to pretend everything is alright than it is to face a painful truth).

If you’ve just received the news that someone you love is struggling with this disease, I need you to take a deep breath and hear this advice before moving forward:

This will be a marathon, not a sprint.

Perhaps one of the most difficult attributes of eating disorders is their lack of universally effective treatment. What works for one person may not work for someone else, and what works for someone at one stage in their recovery may not work for them later down the line. The vast majority of eating disorder recovery is trial-and-error, and the vast amount of progress will be so slow and progressive that you won’t notice it for great swaths of time before you look back and think, “Wow, they’ve really come a long way.”

All this is to say, buckle in for the ride. There will undoubtedly be times where you think things aren’t moving fast enough, or that you can’t see any progress at all, or that they should be “better now.” But what your loved one needs from you right now isn’t a scorekeeper, they need a partner to walk beside them every step of a long journey.

The next thing I need you to hear will likely scare you, but it is meant to free you.

You cannot do this by yourself.

You can’t. Mental illnesses are complex, and highly specialized professionals are required for a comprehensive recovery from one such as an eating disorder.

This isn’t to say that your love isn’t enough to heal your loved one, or that you aren’t enough for your friend. This is to say that it truly takes a village. I’ve seen countless parents absolutely lose themselves in their child’s eating disorder, becoming stressed, overwhelmed, and depressed in their own right as they struggle to save their children. And I’ve seen countless friends develop legitimate fears and anxieties as they try to be the sole member of their friend’s support system, available 24/7 and with no boundaries. It doesn’t have to be this way.

I’ll say it again: do not try to do this by yourself.

Free yourself of the burden of saving the whole world all on your own. Embrace the idea of accepting help and being kind to yourself along this journey. Your friend not only needs you, but they need the whole you: the you that isn’t burned out and run into the ground. I’m not just suggesting that you build a large recovery team for your loved one, I’m noting it as a requirement. Not just for their health and wellbeing, but for yours, too.

If it’s accessible to you, this means getting professionals involved. Your general care practitioner is a good place to start, but more often than not they aren’t trained in the highly specialized field of eating disorders. Ask them for a referral to a doctor specializing in this disease, and hopefully there is one available near you.

The reason I say to start here, and not necessarily with a therapist, is because eating disorders cause legitimate and lasting harm to the physical body. They not only manifest in the mind, but in the physical being: anorexia is the mental illness with the highest mortality rate of them all. Other eating disorders- such as binge eating, bulimia, and orthorexia- cause lasting damage to the teeth, bones, skin, and cardiovascular and digestive organs in the body. I don’t mean to scare you when I say the clock is ticking to get your loved one help, but I want to to understand fully that there is and urgency in this situation, and looking away from an issue that scares you will undoubtedly do more harm than good- no matter how comforting it feels in the moment.

Do this even if you think they are “too big,” “not a girly-girl,” or “don’t look sick enough” to have an eating disorder. The media has inaccurately portrayed the demographic of victims of this disease for so long, that it’s not uncommon for you to not know that eating disorders come in all shapes, sizes, ages, and gender identities. Far too many sufferers of this disease never get treatment because they don’t fit the stereotype of someone with an eating disorder.

But even if you don’t think their condition is “severe,” seeing a doctor trained to diagnose and communicate with eating disorder patients is invaluable. Oftentimes simply being made aware of the damage they’re doing to their own body can be enough to shock a patient into being a more active participant in their recovery (although I wouldn’t count on it simply allowing them to “snap out” of their disorder). Remember, this is just the first step in your marathon.

I want to warn you that your loved one with an eating disorder will likely despise you for this.

Actually, it’s more accurate to say that their eating disorder will despise you for this, because it’s the eating disorder itself that wants to cling on to your loved one. Your loved one doesn’t want the pain, suffering, and insecurity of the disorder, but like a parasite desperate for a host to prey upon, the disorder will do anything to protect itself.

Do not be surprised if your friend or loved one lashes out at you for getting them professional help. Be patient. Do not respond to their anger with more anger. In your mind, remain aware of the fact that their eating disorder is the one being angry and hateful towards you, not them. This is all easier said than done, and will be a constant exercise in mindfulness for you, but it will get easier with time.

Depending on the diagnosis of the doctor, you will likely have several treatment options placed in front of you.

Eating disorder diagnoses are largely physically-based, meaning that your doctor goes down a list of physical symptoms, and if they meet a certain amount of them, will be clinically diagnosed with the disease. These symptoms include amenorrhea (loss of the menstrual cycle), lanugo (long, downy hair that grows in an attempt to keep the patient warm), slowed heart rate, and drastically lowered blood pressure.

A big reason that doctors diagnose a mental illness with physical symptoms is to make treatment more affordable. Mental illness treatment is wildly expensive without insurance, and oftentimes insurance companies will only cover treatment based on physical symptoms. To further simplify: insurance companies are more likely to cover a hospitalization or in-patient treatment for “a low heart rate and blood pressure” than they are for “anorexia nervosa.” It’s obvious here that there’s a flaw in the system, but for now, this is how it operates.

Your doctor may recommend immediate hospitalization. This was what happened to me when I was taken to see my ED-specialized doctor for the first time. My heart rate was low enough that I was at high risk for a heart attack, and my doctor only felt comfortable knowing I’d be under 24/7 medical observation in the beginning of my recovery journey. If your doctor recommends this, know that it’s okay to be scared.

Hospitals are scary. A loved one being hospitalized is scary. But know that for many, this is a necessary first step to beginning their recovery. I know that for myself, it helped me understand the severity of my situation. It also gave me a motivation to continue my recovery once I was released, because I sure as hell did NOT want to go back to that place.

Your doctor may alternatively suggest an in-patient (but not in-hospital) recovery center. This is place where your loved one will live for a period of time with other recovery patients to (hopefully) gain the recovery skills they need under the watchful eye of trained professionals. Please, please, please do your research before accepting any referrals to in-patient programs. These centers can often do more harm than good by placing sufferers of a highly competitive disease in close contact with one another, and you need to be certain that you choose a center with a positive atmosphere conducive to recovery.

If the professional doesn’t suggest either of the options, they may send you home with a family-based recovery program, such as the Maudsley Method. These kinds of approaches have mixed reviews and rates of success, so work with your doctor and get multiple opinions before choosing the one right for you and your situation. Be prepared for even more backlash in this situation, as much of the blame will be placed on the parents or guardians as they take on the role of the “enforcer” of recovery (at least in the early stages).

If your loved one is hospitalized, placed in in-patient, or sent home with a family-based recovery program, be prepared to take on a new role in their recovery.

It is not your job to solve their problems. It is not your job to offer advice that contradicts that of their recovery team. It is not your job to modify their treatment plans without heavy consultation with professionals first. Your job is to hold space for them during a highly difficult time in their life.

Holding space is extremely difficult, because our instinct is often to do far more than is necessary or helpful. We want to give advice, or assure them that everything is okay, or tell them we know “exactly how we feel,” or tell them their life “could be worse.”

Holding space means two things: listening, and acknowledging.

Remember, someone is never wrong when they are telling you how they feel. Trying to dispute them or convince them otherwise only serves to make them feel invalidated and unimportant. Instead, listen. Attentively. Silently, with the exception of a few thoughtful questions such as, “When do you feel this way?”, “How can I best support you?” or “What should I do when you feel this way?”

Validate how they feel, without adding commentary or justifications. Say things like:

“That does sound really hard. I’m here for you in any way that you need me.”

“I don’t know what to say, other than that I love you and I support you.”

“Thank you for sharing how you feel with me. You can always trust me to listen when you need someone to talk to.”

When in doubt, remind them how much you love them and how proud you are of the steps they’re taking towards regaining health. This is the greatest gift you can offer someone in recovery.

There’s something you need to know if your loved one was hospitalized or placed in a center for recovery:

In-patient doesn’t last forever.

There’s a certain element of safety knowing that your loved one is surrounded by professional healers, but this phase has to come to an end eventually. At some point, your loved one will need to prepare themselves to go out into the world and handle the day-to-days of living with mental illness, and this can be very scary as an outside observer. You will likely find yourself asking, “How can I make sure they don’t mess up and hurt themselves? How can I force them to stay on the right path? How can I make sure that they’re eating enough, or that they’re not eating too much, or that…”

Slow down. Take a deep breath. Here’s the answers you are seeking:

You can’t control their actions and behaviors.

They will mess up and they will hurt themselves.

They will stray from the path. They will eat both too much and too little.

This is all a part of recovery. Failure is integrated right into the path towards freedom from mental illness: it’s not the end of the line, it’s a necessary step. In order to learn what “normal” and “freedom” looks like in their lives, they need to slip-up and feel what it’s like to do so…time and time again.

It will be hard to watch, but it is not your job or your place to try and force them to stay stable. Once again, your job is to hold space, and be there for them as they find their way back onto the horse. Ask them if they need support, and gently remind them of the support system they have at their fingertips, such as therapists, nutritionists, and doctors. With no judgement or anger, have serious conversations with them if you become genuinely worried about certain behaviors, but never become angry or throw around accusations. Remember, they’re trying, and trying implies some mistakes along the way.

Recovery is a choice that your loved one needs to make every single day of their lives. You can’t make this choice for them, no matter how much you love them.

True recovery cannot be forced on a person. You cannot force recovery on a person, no matter how badly you want to save them. The best thing you can do is empower your loved one to make this choice for themselves. Tell them how much they mean to you: them, not the eating disorder. Share with them the hopes and dreams you have for your future together, like sharing family meals together again, going for long hikes, and seeing them smile again. Remind them at every opportunity how much they are loved, and how much this world needs them to be their fullest and strongest self. Provide them with every resource possible, but allow them the space to utilize these resources with as much autonomy as is conducive to their recovery. The more you push, the more the eating disorder wants to push back.

Much of this support will come through the language you use in communicating with your loved one.

As much as you can, avoid ever discussing appearance in relation to their worth or importance. Don’t tell them “they already look great,” or that they “look so much better at a heavier/lighter weight.” Eating disorder sufferers are already spending countless hours a day obsessing over the shape, size, and changes in and of their body. They do not need you to play into this obsession.

Instead, compliment their spirit, tenacity, and bravery as they pursue recovery, and avoid any discussion on appearances. Encourage their hobbies and interests, and encourage them to try new things. When I was in the early stages of my own recovery, I felt as though my entire life revolved around my eating disorder. My days were nothing but doctor’s appointments, therapy, and food challenges. Not only did this exacerbate the obsessive tendencies of my disorder, but it caused me to lose my identity and any remaining excitement for life. What was the point of recovering if life seemed so dull and miserable?

Join them in taking up a new craft or art form. Join a book club. Make dream boards. Try gentle yoga. Begin learning a new instrument with them or help them sign up for lessons. Give them a reason to be excited for a recovered life. And allow yourself to embrace this creativity and passion-seeking as well: don’t allow yourself to be consumed by someone else’s disorder.

You also need to be aware of the fact that many of the fears, anxieties, and triggers your loved one has will not seem rational or important to you.

Eating disorders create deep fears that anyone without an eating disorder will likely find unrelatable. You mind find yourself frustrated, or even angry, when your loved one is having a particularly difficult mealtime or struggling to explain to you why they can’t eat in a restaurant right now.

“Why can’t they just eat it?” You may find yourself asking desperately,  “Why can’t they just let us have an enjoyable meal out one time?”

I don’t judge you for having these emotions. Eating disorders are highly stressful for anyone and everyone that’s involved. But you need to know that while these fears may seem trivial to you, a disordered person feels them with a terrifying depth. It’s not just about the food. It’s about relinquishing the one thing that’s offered them a sense of control and self-worth. It’s about reprogramming a lifetime of social conditioning and body image issues. It’s about overcoming the voice in their head that tells them their eating disorder is the only thing that makes them special and worthy.

This process demands of you to be patient with them as they work through all of these things and more, which means never minimizing or trivializing the emotions they’re having in relation to food, body image, or anything else. Listen to what they have to say, and avoid saying anything out of frustration that is a result of you simply not relating to how they’re feeling. Ask them what kind of language and conversation topics trigger them (common ones are “diet talk,” commenting on their own or other’s appearances, and exercise regimes) and avoid them out of simple politeness.

Guide them forward while avoiding unnecessary triggers to moving too fast.

Similarly, you may feel as though you need to “push” them out of their comfort zone in order for them to make progress. You may fear being an “enabler” or not helping them enough if you don’t do these things, which is certainly something to remain aware of. However, this doesn’t mean trying to make them eat chocolate cake for breakfast or shoving fear foods in their face in public or in front of friends. Facing deep and legitimate fears is a private experience, especially in the beginning. 

Set up sound ground rules that are unmovable with your recovery team, things like eating at least 3 full meals a day or not being allowed to skip breakfast. These are the things you can really push and hold your ground on. Every other aspect of growth should rely on gentle reminders and encouragement. These are things like eating in public or in restaurants, or eating something that’s not “on plan.”

Make it low-pressure by saying things like, “I’d love if you joined me for lunch today. Can I treat you to that restaurant you used to love?” instead of saying, “You NEVER eat out anymore. You should go to lunch with me today. I want to go to that restaurant you used to go to all of the time, before you were sick.” Notice that one of these encourages and eliminates unnecessary pressure, whereas the other guilts and shames the other person into participating when they may not be at that phase of their recovery journey yet.

In the end, recovery is found in unlikely places.

When I take a step back and look at my own recovery journey, I don’t know that I can pinpoint one form of methodology or treatment that helped “the most.” Hospitalization alerted me to the severity of my condition, and gave me an initial reason to pursue recovery. Therapy helped me process the emotional pain of hospitalization, and worked on some of the healing that wasn’t in direct relation to my body. Yoga taught me mindfulness and self-acceptance.

But more than just being a mindfulness tool, yoga offered me a passion. It lit a fire within me that offered me a joy I had never found in life. It was something that made me purely, wholly, and completely happy, and it was something that gave my life a purpose as both a teacher and a student. For some, they’ll find the passion that sparks their recovery on a stage in a play. Or they’ll find it out in nature. Or they’ll find it in a math textbook. For me, I just happened to find it on a yoga mat.

The greatest recovery tool you can offer your loved one is the support to find their own passion and purpose.

Help them see just how much the world needs their light, and help them see the beauty the world has to offer when they’re living in that light. And most importantly, allow them to be more than just their disorder in your eyes. Love them, above and beyond the disease shaking up their life right now.

This will all be worth it in the end. Things get better. Keep moving forward.

I believe in you.

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Photos by Roberto Martinez.

 

 

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