‘Our bodies are fragile as fuck’
A conversation with Jayne Mattingly: therapist, eating disorder recovery coach, and disability advocate.
Jayne Mattingly is the CEO of the Recovery Love and Care eating disorder recovery practice, has recovered from an eating disorder, and lives with progressive chronic illnesses and physical disability. We spoke about Americans’ obsession with “health,” the role of a coach in a recovery setting, and the idea of “normal” eating.
Our conversation has been edited and condensed.
MJ: How are you feeling about your body image and your relationship to your body right now, and how has that changed since your diagnoses [of Ehlers-Danlos syndrome (EDS), which affects the connective tissues, as well as intracranial hypertension]?
JM: I’m heading into a big surgery. This is my 14th surgery so I’m used to it, but it’s new every time. It activates my nervous system, so I nest. I start prepping the house. I’m doing a sound bath with my girlfriends tonight. I’m trying to be intentional about being kind to my body, nourishing my body.
When I was diagnosed with Ehlers-Danlos syndrome and intracranial hypertension, I was about six years into my recovery from an eating disorder. Movement was such a big part of my life, I was going to barre and spin and yoga, it was such a spiritual part of my body image healing. I got brain surgery, and I was like, “Oh, I’m done, I can go back to my life now.” That was not the case. I pushed it too far. I was in denial, I was white-knuckling it. I had to be in that space to get to this point, I think.
Why do you think you had to white-knuckle it to get to where you are now?
I’m a workaholic, a perfectionist, very tightly wound. I had to fail at trying to fix [the conditions]. I didn’t realize that I couldn’t fix it.
I went [in the past] with a sentiment of, “Don’t love your body for what it looks like, love it for what it can do,” and that’s really problematic, because our bodies eventually stop doing, so when mine stopped doing, I was like, “What now?”
I really thought I could push through, I white knuckled, my body kept telling me to stop. I broke myself down. Once I was finally able to stop, it hurt. I was grieving. That body grief is what I was avoiding, this emotional pain.
I grew up in the “It’s about what your body looks like” space. Now I’m in the “It’s about what your body can do” space, but you’re right about that space having its problems. If you’re not in either of those, what space are you in?
I’m existing in an, “I’m inherently worthy no matter what I can or can’t do and my connections and values are what make me who I am, not my body” space. Is that a perfect science? Absolutely not. Do I fight with it? Yes. We live in a really ableist society, I have a ton of internalized ableism. We live in a society that tells us health is the be-all and end-all, if we have our health we’ll be happy. That’s not true. So many of us in the U.S. don’t have our health and we’re still happy.
I think it comes down to: Bodies in general are inherently worthy. Bodies are vessels and containers in which our souls and spirits and connections live, and our bodies are fragile as fuck. Human fragility is something I don’t think our bodies are ready to face.
You’ve developed RLC University to train people to be recovery and body image coaches. On your website you say the world of coaching is the “Wild West.” How is the coach role different from a therapist or another professional?
The reason I went into recovery coaching is I realized there’s a major gap within treatment. You go to inpatient, leave inpatient, then you’re seeing a therapist once a week, or once every two weeks. There’s a big reason why, on average, a person who goes to a higher level of care goes back eight to 10 times. That’s a really big systemic problem, not an individual problem. Coaches kind of mitigate that. In the mental health field often therapists will say “too many cooks in the kitchen” is a bad thing. With eating disorder treatment that isn’t the case; the more cooks in the kitchen the better, as long as we’re working collaboratively.
A coach doesn’t replace a therapist or dietician. A coach is a supplement and additive to a team. They work on the here and now, body image, meal support, grocery shopping, those daily triggers. The bigger team is so important for people with eating disorders because it’s not just about eating, it’s not just about body image, it’s not just about movement or mental health—it’s about everything. It affects your finances, your family, friendships, body, physical health.
Another big part of it is training and credentials. There’s no board saying you can be a recovery coach. We make sure [RLC trainees] have continued education, are in supervision, are getting proper consultation, and are not charging clients more than they can afford. The curriculum is a rigorous training model.
There’s not enough representation in the eating disorder professional field. If people in the BIPOC communities, or larger bodies, or trans bodies have eating disorders and want help, how are they supposed to feel safe if it’s just people [in the recovery field] who look like me? My goal was to create a curriculum that was more accessible for professionals to work with clients in more marginalized positions. A lot of my graduates are disabled, have chronic illness, and are within the BIPOC communities.
You mentioned being very active in the past. Where are you getting movement now?
For me, it’s seated, recumbent, even lying down. I have to be able to move my body somewhat, and it is about joy. But it’s hard to have joy without judgment sometimes, when it’s against everything I ever learned. I still have that, I’m not going to lie—I still have a lot of judgment towards my body and how it moves.
There’s this fear of contagion as humans where we’re like, “You just need to eat better!” People say that because they’re uncomfortable with the fact that I am sick and I eat well. They want to think I’m sick and disabled because I didn’t treat my body well, not just because it just happened.
What are the biggest misunderstandings about both having an eating disorder and living with disabilities?
With eating disorders, you cannot be yourself when you’re starving. Your frontal lobe is not turned on. You’re going to sound different and treat yourself and others poorly. The more you feed yourself the easier things get. You become a different person.
With disability: I’m not a defect. I’m not something to fix. It’s not like I’m all of the sudden trying to get better, be able to walk, whatever. Having a disabled body is no different than having an abled body, I just have different abilities. We all become disabled at some point, because we age.
We’re talking more these days about what eating disorders are and can be. People are quick to point to what they think disordered eating is. For you, what’s “ordered” eating? What eating habits feel right?
If you have a past of living with an ED for a long time, your hunger and fullness cues are incredibly sensitive, your hormones are sensitive. So especially when you live with a chronic illness with medications that disrupt those things, my cues are quite sensitive. So, no matter what, I still eat. Even if I’m not hungry, I know I still have to eat breakfast, I still have to eat lunch. That’s responsible eating to me. If I’m craving something I eat it, I don’t count calories, I don’t count macros, I truly eat intuitively. That’s “normal” for me.” I think there’s no true normal. I hope that in future diagnostic manuals ED exists on a spectrum, because I think everyone has some sort of disordered eating on some level at some point in their lives because diet culture is so saturated in our medical culture.
Thinking about eating is exhausting, as someone who’s dealt with binge eating and still does occasionally. The internal dialogue about food is exhausting. I think it’s exhausting for most people.
From a clinical standpoint, the dialogue you’re talking about is not what everyone experiences, which I think is kind of wild because I always thought it was. When I was in my ED, I was like, “Oh, everyone experiences this,” but they don’t. That is the ED. People don’t have this dialogue that is just tiring them out. I hope that’s validating for people, knowing how hard this is.
I don’t have that dialogue, really, anymore. I really don’t. Are my hunger and fullness cues all wacky? Absolutely. But I think with proper neural training and proper continued work and care those thoughts can go away. I know that it’s possible.