Debunking Myths About Severe and Enduring Eating Disorders (SEED): Why Recovery Is Still Possible

There’s a damaging myth in the eating disorder field that people with severe and enduring eating disorders (SEED) are “too far gone.” That after a certain point—too many years sick, too many treatment stays, too many failed attempts—they become a lost cause. That all we can do is manage symptoms, minimize harm, or worse, start preparing for end-of-life care.

I’m here to challenge that narrative.

What Is SEED? Understanding the Definition and Characteristics

SEED stands for Severe and Enduring Eating Disorder, a term used to describe individuals who have experienced a long duration of illness. There is not really one agreed upon definition, but often it’s assigned when clients struggle 7 years or more, with little or no sustained progress in traditional treatment. These individuals typically carry complex diagnostic profiles, including co-occurring conditions like depression, anxiety, OCD, PTSD, or substance use. SEED clients often present with a long history of treatment attempts, chronic medical instability, and significant functional impairment in areas like work, relationships, and daily living.

SEED is a clinical descriptor, not a life sentence. It reflects a history, not a prognosis. Just because someone has met the criteria for SEED doesn’t mean they can’t recover or that recovery must look a certain way.

What makes SEED particularly complicated is that the eating disorder is often no longer about body image or weight. It’s become a deeply embedded coping mechanism. And after so many years of illness, it’s not uncommon for clients to feel hopeless or believe recovery isn’t possible for them.

That was me.

I meet nearly every marker of a SEED client. I struggled for over 20 years, only first getting help after six years of unsupported struggle, nearly already meeting criteria as a SEED client before I even got help. I had disordered eating since childhood, a genetic predisposition to both eating disorders and substance use, and carried a complex dual diagnosis: a severe eating disorder alongside alcoholism, major depression, suicidality, anxiety, and likely undiagnosed OCD. I was in and out of treatment for over a decade—residential, IOP, PHP, outpatient therapy—and yet could never sustain recovery. I relapsed every time.

I was the client people referred to as “complex.” Providers didn’t always know what to do with me. I was the one who was always circling back into care, never making real progress, and often seen as resistant or unmotivated. But I wasn’t resistant. I was desperate.

This blog is about what happens when someone like me gets a different kind of help—one rooted not just in compassion, which I always had, but in a kind of support that offered both autonomy and meeting me where I was at. My therapist cared deeply, maybe even too much and I know now that her desperation to help me came from fear, not frustration. But at the time, that fear sometimes came across as pressure or even anger. What I needed—and what finally helped—was the space to make decisions for myself, once I was well enough to do so. This is about what happens when the most severe cases are met not just with concern, but with trust in their ability to heal.

Recovery Is Still Possible—No Matter What

I don’t care how long you’ve struggled. I don’t care how many diagnoses you carry or how many treatment centers you’ve been through. Recovery is still possible. Full stop.

I say this not only as a recovery coach and peer specialist, but as someone who lived with a long-standing, complex eating disorder and multiple co-occurring conditions.

I struggled for decades—twenty years. At times, I was actively suicidal. I didn’t want to live if this, the eating disorder, the alcoholism, the depression, was going to be my life forever. I desperately wanted to escape the pain and suffering.

There were moments when I felt completely hopeless. Times when professionals gave up on me. Times when I gave up on myself. But somehow, I kept going. I kept showing up. I kept trying the next thing, just in case it worked.

And eventually… it did. Something clicked. My motivation began to shift. And now, life is completely different from the life I lived when I was sick. It’s full. It’s connected. It’s meaningful.

There is grief in realizing how much time was lost to illness. But there’s also power in reclaiming what’s ahead. Recovery doesn’t erase the past, but it makes a future possible.

I never would have experienced this if I had given up or if providers stopped believing in recovery for me. That’s why I believe so deeply in holding onto hope, especially for those who’ve been struggling the longest. Because no one is a lost cause.

SEED Clients Are Not Lost Causes

Providers need to hold onto hope, not just for their newly diagnosed clients, but for those who have been sick for years. SEED clients deserve the same care, respect, and belief in recovery as someone just starting their journey. If a client still wants recovery, the goal should remain full recovery.

That doesn’t mean pushing rigid treatment protocols that haven’t worked before. It means collaborating. Asking what they want out of recovery. Maybe full recovery is too big a jump for them. Adjust the goals to something doable. Building quality of life instead of solely focusing on traditional markers like weight restoration or meal compliance may resonate more deeply with SEED clients.

That approach worked for me. We took the focus off of weight restoration and instead worked on the things that truly mattered to me: my relationships, my career, my ability to be present in my life, my values. When I was finally allowed to be in the driver’s seat, to make my own choices about treatment, to name my goals, and to decide what healing looked like for me, It sparked something. I actually wanted to get better. I wasn’t doing it to avoid threats of being dropped by a provider or to check off a box. I was doing it for me.

For so long, my identity was wrapped in being “the sick one.”. Recovery gave me the space to rediscover who I was outside of illness and start building a life worth staying for.

And when the thing I was most afraid of, weight gain, wasn’t being forced or pushed on me, my motivation began to shift. Suddenly, I had space to build trust with my providers and with myself.

And here’s the part no one talks about enough: as I started to heal in other areas—socially, emotionally, functionally—the food piece and even the weight gain began to happen naturally. The pressure was off, and in that safety, change could finally take root.

When you give clients autonomy to set their own goals and define what recovery means to them, it can radically shift motivation. Because recovery doesn’t have to start with weight—it can start with hope.

Scare Tactics Don’t Work—Compassion Does

There’s a common practice of using fear to try and push clients into change: “If you don’t do this, I can’t keep seeing you.” Or, “You’ll die if you don’t comply.” While these statements may come from a place of concern, they often backfire. They push clients further into shame and isolation.

Especially for SEED clients, many of whom already feel like failures or burdens, compassion is far more effective than fear. What these clients need is more support, not necessarily ultimatums. Many have been through treatment countless times. Sometimes it’s not about “trying harder,” it’s about trying differently.

The Nuance: Autonomy, Safety, and the Role of Providers

There’s a tension that’s hard to hold in the eating disorder field—especially with SEED clients—and it’s this: Clients deserve autonomy. But sometimes, they’re not well enough to use it.

This isn’t about infantilizing clients or stripping them of their rights. It’s about recognizing that when someone is medically unstable or cognitively compromised by starvation, depression, or substance use, their ability to make sound, life-preserving decisions is impaired. They’re not stubborn or unmotivated—they’re sick.

And I say this as someone who’s been there.

Early in my journey, I was incredibly ill. I was drinking heavily, deeply depressed, and severely malnourished. I wasn’t capable of making pro-recovery choices. I didn’t care if I died, and in fact, sometimes I hoped I would. Depression kept me locked in hopeless thinking. No amount of “you’ll die if you don’t eat” registered as a reason to keep going. I wasn’t afraid of death. I was afraid of living like that forever. Death felt like an escape from the pain.

So I fought treatment. I fought my providers. I didn’t want to go. And yet, those treatment stays saved my life. They bought me time. They gave my body and brain space to stabilize just enough for new possibilities to take root.

It didn’t feel good to have decisions made for me. I was angry. I felt powerless. But the truth is, I wasn’t in a place to make empowered decisions. Not yet. I needed providers who were willing to hold that line until I could hold it for myself.

And eventually, I could. When I got sober, when my depression lifted, when my brain was nourished. I could start making choices from a place of stability rather than survival. That’s when healing truly began: when I had both the capacity and the autonomy to drive my recovery forward.

But here’s another nuance that doesn’t get talked about enough: sometimes providers must make impossible choices. When a client is clearly not safe at an outpatient level of care—when they’re suicidal, medically unstable, or refusing to step up to a higher level of care—providers are placed in an agonizing position. Do they continue offering support, knowing it may no longer be clinically appropriate or safe? Or do they let the client go, knowing it could be perceived as abandonment?

It becomes an ethical tightrope walk between risk and responsibility. It’s not about punishment, it’s about safety. And ultimately, it comes down to the provider’s comfort level and liability. As heartbreaking as it is, this is a very real dilemma.

My therapist faced this decision with me.

For months, I was uninterested in helping myself. I was engaging in reckless, life-threatening behaviors nearly every night. I wasn’t following through on anything that could move me toward stability. She tried everything in her power to support me, to keep me safe, to keep the relationship intact, but ultimately, I was not responding to her loving attemps, and she made the decision to let me go.

It was not for lack of care or love. In fact, it was because she cared. Sometimes, these decisions are made out of care and love, because continuing to watch someone deteriorate without enough leverage to intervene can become unbearable. Holding boundaries isn’t the opposite of compassion. Sometimes, it is compassion.

As a client, it was devastating. I felt abandoned. I grieved that relationship deeply.

And yet, it was also a turning point. Without that lifeline, I was forced to make a decision: stay stuck, or finally fight for myself.

In the time we were apart, my mood stabilized. I got sober. And eventually, I came back. I’m still working with her today. And yes, we still talk about that period—the rupture, the pain, and what came after.

It’s hard to reconcile the grief of that moment with the growth that followed. But both are true. I hated it. And I also grew because of it.

This is the messy, complicated truth about recovery from a severe and enduring eating disorder: it’s not linear, it’s not simple, and sometimes, the moments that feel like betrayal are the very ones that save us.

It’s Time for a Different Approach

For many individuals with SEED, traditional treatment models—particularly repeated higher levels of care—can start to feel disempowering, ineffective, or even retraumatizing. After years of cycling through the same approaches, it may be time to consider different kinds of support. Support that’s flexible, human-centered, and designed to meet people where they are.

Here are a few alternative or supplemental approaches that may offer renewed hope:

• Eating Disorder Coaching

  • Coaching offers in-the-moment, real-world support that’s often missing in standard treatment. Instead of focusing solely on the clinical “why,” coaching is about the practical “how.” How do I get through a meal when I’m panicking? What do I do when I’m home alone with the urge to restrict or binge? How do I manage a triggering event without spiraling?

  • Coaches provide structure, accountability, and compassion in daily life, whether it’s through meal support, grocery outings, text check-ins, or skill-building. This kind of support can help clients gain traction when everything else feels stuck. And because many coaches (myself included) have lived experience, they can model what recovery actually looks like outside of treatment walls.

• Mentorship or Peer Support

  • Sometimes, what a client needs most is someone who simply gets it. A peer who’s been in the trenches of an eating disorder and made it out. Mentorship can break through the loneliness and isolation that so many SEED clients experience. It’s not about fixing someone—it’s about walking beside them.

  • Peer support can build hope, model recovery, and help validate the emotional toll of long-term illness. This kind of connection can be incredibly empowering, especially for those who have felt misunderstood or dismissed by providers.

  • Organizations like the Eating Disorder Foundation and ANAD offer free peer-mentorship programs for both those with eating disorders and their caregivers.

  • And coaching often includes this peer element too—bringing the best of both worlds: lived experience and structured recovery support.)

• Virtual Care Models Like Equip or Within Health

  • Equip offers virtual, team-based treatment that fills the gap between outpatient and higher levels of care like IOP or PHP. It’s especially helpful when HLOC is inaccessible due to finances, logistics, or past experiences. Equip incorporates therapy, dietetics, medical oversight, and family-based treatment with flexibility and a values-driven framework.

  • For SEED clients who’ve cycled through treatment settings without long-term change, a virtual model that works from home and centers the client’s lived environment might offer a new path forward.

Don’t Let Them Give Up

What helped me was simply not quitting. I kept trying the next program. I kept attending the next session. I kept showing up at the next meal, even when I felt discouraged and hopeless. And eventually, one of those attempts began to stick. Then another. Then another.

Even when SEED clients express suicidality, it’s often because they’re desperate for relief, not because they truly want to die. The physical and emotional suffering of long-term malnutrition and isolation is unbearable. That doesn’t mean they’ve given up. It means they’re in pain. And they need people who won’t give up on them.

While the topic of palliative care for SEED clients is gaining attention, we must tread carefully. There needs to be much stricter and more thoughtful criteria around when—and for whom—that approach is truly appropriate.

Holding hope for someone who can’t yet hold it for themselves is sacred work, but it’s also incredibly hard. Providers need support too. Supervision, consultation, and collaboration are vital when walking with SEED clients through the darkest parts of their illness.

Clients deserve autonomy in their care, but it’s also important to recognize that malnutrition can deeply impact cognition, mood, and decision-making. When someone is in constant pain, physically depleted, and emotionally exhausted, it's understandable that they may feel hopeless or unable to see another path forward.

That’s why we need to listen closely and validate what clients are feeling, while also recognizing that their perspective may shift with proper nourishment, support, and time. What feels impossible today might feel more manageable tomorrow if the brain and body are better supported.

Final Thoughts: Hope Is for Everyone

SEED clients are not “too chronic,” “too stuck,” or “too far gone.” They deserve the same hope, the same support, and the same compassion as anyone else in recovery. They need providers who believe in their capacity to heal and who don’t give up before they do.

If you’re someone with a long-standing eating disorder, I want you to know: You are not a lost cause. You are still worthy of support, connection, and healing. No matter how many times you’ve tried. No matter how deep in it you feel. Keep showing up. You never know what’s going to stick.

And while not every SEED client will reach full recovery, every person can move toward more safety, more connection, and a better quality of life. Progress doesn’t have to be perfect to be powerful.

And if you’re a provider working with someone who has SEED, please keep believing in them. Try a different approach. Collaborate. Empower. Adapt. Because everyone deserves a chance at recovery and no one should be left behind.

If you or someone you love is struggling with a severe and enduring eating disorder, know that there are alternatives to traditional treatment and recovery is still possible. As a certified eating disorder and substance use coach, I offer individualized support rooted in lived experience, compassion, and practical tools for real life.

Visit wedorecoveredcoaching.com to learn more or schedule a free consultation. Let’s take the next step together.

Title of my presentation at the NetworkED conference, Aug 2, 2025