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Helping All Humans Affected By All Eating Disorders    

Helping All Humans Affected By All Eating Disorders

Art by FISK

By Meadowlark Monaghan

Each time I meet someone new from a mental health organization, nonprofit, or program, I ask them for their story. I know they all have one, or as I say in said Zoom calls, “we all get into this work for a reason.” While it’s always a pleasure to hear about each person’s path… no one shares quite like Johanna Kandel. 

Johanna is a breath of fresh air. She intimately walked me through her story of experiencing eating disorders for over a decade, how she was robbed of her ballet career, and most importantly, how she found recovery and the strength to start a nonprofit organization to dedicate her life to helping others find their recovery as well. 

Johanna’s nonprofit organization, The Alliance, is founded in her healing. The Alliance programs are a direct result of her first-hand experience navigating the behavioral health system when she needed support. She created The Alliance to be a place for folks to be seen and heard. People can come as they are. There is no perceived way. It doesn’t matter if you started your journey to recovery at this moment or if you have been recovered for decades. Johanna “helps all humans affected by all eating disorders.”

The Alliance is here to educate individuals, connect people to care, and support them to let them know they are not alone. To let them know that other people speak their language and recovery is possible.

If this interview brought something up for you or someone you love came to mind, I highly encourage you to get in touch with The Alliance to find out more about how to get the support you or your loved one deserves. 

(This interview has been edited and condensed for clarity.)

What led you to work in mental health? 

I got into this work because I nearly lost my life to an eating disorder that I never set out to have. 

EDs run on both sides of my family, so saying I was “genetically screwed” is an understatement. I was a people pleaser, black or white thinker, and a perfectionist. And a ballet dancer.  When I was 11 ½, my ballet teacher told all the girls in my class that we were to lose weight for an audition coming up. This was in the late 80s/early 90s when everything was fat-free, and diet culture was big. As a kid, I didn’t like healthy foods. So when I told my mom that I, as a kid who never ate their fruits and veggies, was suddenly going on a healthy food diet willingly, she was thrilled! I went out on a simple diet that everyone else seemed to try. But for me, I went under my body set point. Then, my genes started firing, and before I knew it, my ED turned into my maladaptive way to cope with feeling like I wasn’t good enough. 

Over my decade-long battle, I experienced different EDs. My EDs went undetected. Many times intervention could have and should have happened. But, because less than 20% of healthcare providers are thought to screen for them, it never was. 

Ultimately I had to stop dancing. EDs had stolen my ballet career away from me. And when that aspect of my identity was stolen, the only one that felt safe was my ED. It’s not about body image. It’s not about weight. It was simply how I numbed the feeling that I didn’t deserve to be seen, heard, or to take up space. Rather than feeling that, I numbed through my ED. It was familiar and safe. I knew what to expect. 

It wasn't until my last semester of college that my fear of change became less than my desire to see what life was like on the other side. It wasn’t an aha moment. It wasn’t my rock bottom. It was just me picking up the phone to say, “ I can't do this anymore.” After my own healing, I knew I wanted to work with folks with eating disorders. So instead of graduate school, I started a nonprofit. I took out a loan, moved back home, and in October of 2000, I founded The Alliance. I worked three jobs for years and years to keep it going. But it’s been nothing less than extraordinary. It solidified me and my recovery. 

What along your journey to healing finally clicked for you? When did you commit to recovery?

My journey wasn't easy or straight. It was such a mess! One step forward, two steps back. Firstly, it was hard to get access to care. I didn't look like I had an ED. When I finally did get access, the first therapist I ever saw told me that I would have my ED for the rest of my life. I assume the intention behind that was “healing is a lifelong journey,” but what I heard was, “why are you here? It won’t get better.”   So, I didn't show up for therapy. It took a few more months to find a clinician that specialized in EDs. Finally, that was a game-changer for me! But then, I needed higher levels of care, and my insurance wouldn't cover it. I had to piecemeal it and find it on my own. 

Slowly, I learned more and more into recovery. And I do consider myself recovered. I don't care what word you use; that just works for me. I want people to know that complete recovery is possible and that there is life beyond eating disorders. But, you recover to real life, not utopia. But at least you get to show up. That’s always been my north star. In recovery, you will trip and fall, but it's not about that. It’s about if you stand up in the next moment. 

What can ED recovery look like? 

Many people have a misplaced understanding that eating disorders (EDs) are disorders of choice and vanity; they are not. What they are is: biopsychosocial, genetic in nature, and comorbid with other mental illnesses. One important point for me to share is that all EDs are restricting-based types of disorders. Someone with an ED is malnourished. Individuals that are of all shapes and sizes can be malnourished. The truth is that there is no definition of recovery so there is room for interpretation. 

For some, recovery looks like not engaging in certain behaviors. For others, it's not having recurrent obsessive and compulsive thoughts. Some people live life in recovery with very structured meal plans. For my recovery, I leaned into “intuitive eating” (eating when you’re hungry, stopping when you're full). A lot of folks in recovery don’t have the ability to diet, or go on cleanses, or do any prescribed restriction. Same for myself, if I lean into diet culture at all, it's a one-way ticket back to my ED. 

I’m recovered, not cured. I still have my genetics, temperament, and traits. If I go below a negative energy balance, my abusive and overwhelming inner voice will start to take over. But, I now have the tools to keep myself grounded against that. 

Our philosophy at The Alliance is intuitive eating. There is no such thing as “good” or “bad” food. There is no moral value. Food is food. We believe that you have to look at the intention behind behaviors. Movement is a great example of that. Do you move for your body to look a certain way or do you move to feel good? 

What are some misconceptions about EDs and some examples of cultural norms that perpetuate them? 

Media is a perpetrator of this unrealistic ideal (social media even more so). How many people will say the phone is the first thing they look at in the morning? A lot. There are huge correlations between social media and major depressive disorder, anxiety, and eating disorders. It’s a constant comparison of someone else’s highlight reel versus our everyday.  We are in a very big weight-shaming, diet culture mentality. We equate thinness with healthiness when it's not the truth. There is health at every size. 

It’s so much harder to live with body shame in higher-weight bodies. Someone in a higher weight body could go for an eye exam and spend the entire appointment listening to the doctor talk about their weight. They went to talk about their eyes! Folks who dismiss someone by their higher weight are so shaming and stigmatizing. This shame and stigma are wrapped up in diet culture, weight bias, and social media. These are the big perpetrators of disordered eating.

What are red flags in content?

  • Before and after pictures
  • Anyone putting out content about particular diet plans or rules about what you “can” and “can’t” do
  • Rigidity around food choices
  • Rituals
  • Talks of specific numbers, medications, or weight talk of any sort. 

There are very dangerous pro-ED sites, so you have to be mindful of who you follow, and the kinds of messages folks are sending out. 

Do you have any tips for those struggling with their ED recovery during this time in COVID? 

COVID is a perfect storm for developing EDs. We are physically distant, feeling like we have no control, don’t know what’s happening, grocery store trips were (or maybe still are) triggering, many people couldn’t get their safe foods, etc. The rates of folks developing an ED for the first time or falling into relapse both went up significantly. 

We remind folks that even though we are physically distant, you don't have to be socially isolated. I know many of us are feeling Zoom fatigue but reach out to friends. When you start to feel that isolation coming on, that should be a sign for you. When you find yourself not reaching out, that is another sign. Accountability is super important. 

You didn't choose this, and you don't have to recover on your own. You absolutely do not have to recover on your own. Everyone deserves access to care. Thankfully so much of that care is virtual now! 

How can those, either worried about a friend or with a friend in recovery, be supportive of their journey?

Eating disorders don’t just affect the human going through it. They affect the family unit.

More than anything, don't be afraid to say something. Typically, we are so afraid to say the wrong things, we don't say anything at all. If you think a loved one is struggling, talk to them. Use “I” statements, don't be attacking. 

More than anything, what I wish someone would have said to me is, “I’m really sorry this is happening to you because you didn't choose this. I love you and I’m here for you. Please let me know what I can do to support you.” And leave the rest to the clinicians to help them, but be a support. Be vulnerable in saying you don't know what to do or say. Simply say, “I won't always respond in the way you may need me too and I’m here to learn and to support.” 

(Editor Tip: The Alliance has support groups not just for those experiencing an ED, but for friends and family members as well.) 

What programs does The Alliance offer? 

We offer free, clinician-led support groups! In non-COVID times, we had 21 in-person groups across the country. Now, we have 5 virtual ones. All groups are therapist lead across the board. Many of our therapists are also folks with lived experience as well, so they show up as a peer and a professional. 

We also have a hotline and Find ED Help mechanism. What makes us different is that we have a fully licensed and specialized team that answers phones in treatment of EDs. We have clinical oversight over everything: support groups and helpline. FindEDHelp.com is our largest and most inclusive ED help base in the country. 

We also do a lot of education and advocacy work, educating frontline responders, doctors, nurses, dentists, and so on to teach folks how to recognize and refer. 

Keep the conversation going by commenting on this story below. You can also connect with us about whatever’s on your mind by texting The Local Optimist Hotline at 310.299.9414.