60% of Anorexics Never “Fully Recover”. Their Stories Are Not Being Told.
Healing may not look the same for everyone. Will you listen?
When faced with the uphill battle of healing from anorexia nervosa, the numbers are stacked against you. Statistics vary greatly depending on who you ask. But an optimistic estimate is that 46% of all who are diagnosed reach that illustrious point of “full recovery”. For those who have wallowed in the depths of inpatient treatment, that number drops to 36%.
From a clinical perspective, “full recovery” is a title reserved for those who reach and maintain a healthy body weight and whose thoughts are no longer governed by an ever-present anorexic dictator. More than that, these are the individuals who learn that they can love and be loved, who embrace nourishment, and who can heal the wounds that anorexia served to protect.
This is not to say that these individuals no longer possess the capacity for self-destruction. To believe that anorexia will vanish without leaving so much as a scar is, in my opinion, fantastical (however, I am happy to be proven wrong). There is always a risk that anorexia will rear her ugly head during difficult times of life. She may be tucked away in the dark recesses of the mind, but anorexia is never forgotten.
Nevertheless, healing represents an opportunity for a full life. A felt existence. Healing offers freedom.
There are certain factors that make this kind of healing more likely. Some, we can control, such as rapid intervention and clinical severity at discharge. Some, we cannot, such as the age of onset and comorbidity. There are also rare cases where a chronic patient makes a sudden and miraculous recovery. Unfortunately, it is unclear what enables this unlikely revolution.
It is, however, a reminder that healing is always possible.
And these people — the ones who have reached rock bottom but who have clawed their way back out — these are the people who we hear from. They are the ones who get out there and write and speak and campaign. They are the ones sharing the stories of hope that are so important for the individuals and families living through the torment of this brutal disease.
It would be misleading for me to suggest that I am a member of the “recovered” club. My anorexic dictator is still very much alive and kicking. Resisting her sanctuary is an active decision I make every single day.
I do not yet consider myself to be one of these lucky few. But as my life continues to bloom in ways I never expected, anorexia’s hold lessens. And I am hopeful that I will join them one day. In the meantime, I am so grateful for all of those who are dedicated to sharing the messages of hope and healing.
But this is the minority. Fewer than half of those who fall into anorexia’s grasp come out the other side. A dark shadow is cast over those who do not reach this point of clinical recovery.
Where do they end up?
Around one-third of anorexia patients attain “partial recovery” or “symptom management”. These are the individuals who walk the fine line between illness and health, unsure of which way the wind will push them.
They may do what is required to avoid residential treatment, but may continually fluctuate in and out of therapy. They may skirt the edges of the critical zone or may suffer the consequences of chronic low body weight: osteoporosis, thinning hair, poor circulation, and the like.
But they will rigidly hold themselves within the narrow window that both anorexia and society deem acceptable. And life will always be that little bit harder.
I sat for 10 years in the realm of symptom management. In that time I achieved some pretty wonderful things. I got a Ph.D., I moved countries, I established myself as a successful academic, and (most importantly) I met and married the love of my life.
However, I was always shadowed by my dark mistress. She offered me things that no one else could: safety, control, self-flagellation, and equilibrium. So I can understand how so many remain trapped in this comforting purgatory.
It is only on reflection that I recognize the toll that this took on my authenticity and presence in life. In a strange way, I am grateful for my most recent relapse because it has given me the opportunity to do differently.
But it is rare that we hear from someone living alongside anorexia. Anorexia thrives in shame, and we give her that each time we deny someone the opportunity to share their story. So this place — a life with anorexia — remains estranged, and the people in it are isolated, unsupported, and misunderstood.
Then there are the ~20% who remain chronically and actively unwell. This group of patients has a name: Severe Enduring Anorexia Nervosa (SEAN). These are patients whose disorder is intractable and debilitating and who require intensive support for the rest of their lives.
There is some debate on how best to “treat” SEAN. Push too hard and they will rebel, falling further from our reach. Do nothing and they will die. This uncertainty is heightened by the lack of research to better understand the needs of this group.
A middle ground is harm minimization and working with, not against, these patients to help them live the best and most comfortable lives possible.
But these are the patients that the world chooses to forget. The ones we sweep away into society's darkest corner and gladly turn our backs on. Perhaps this is because they evoke something in us that we do not want to face: these women and men are a very visual reminder of the fragility of life and the destructive power of the human mind. Perhaps it is a fear of facing that which we do not understand.
Through my time in treatment, I have met many such individuals who would be classified as SEAN. What is so striking about these people is not the emaciation of their bodies, but the emaciation of their souls. They are battered, burnt-out, and jaded. Their eyes contain more pain than I could ever express in words. Not because they have failed, but because they have been failed. Failed by life, failed by treatment, and failed by a world that chooses not to value them.
We never hear from these individuals.
Finally, there is a large number of people for whom anorexia triumphs. Twenty percent of those who have anorexia die within 20 years of diagnosis. The mortality risk for those who have received inpatient treatment is five times higher than matched controls. Partly, this high mortality rate is due to the complications of low body weight. But death due to starvation is less common than death by suicide; this speaks volumes about the inner torment faced by those living with this horrific disease.
I am not sharing these statistics for shock value. I am not anti-hope, in fact, I am quite the opposite. I have to believe that healing is possible because, without that, I wouldn’t be able to keep fighting.
This is also not a slight of the many clinicians who dedicate their lives to walking alongside those living with anorexia. I have met some of the most extraordinary therapists, nurses, psychiatrists, and dieticians, to some of whom I owe my life. Not only must they master their thankless clinical duties, but they are the patrons of hope, strength, and commitment for their patients and their families.
But the cruel reality is that current treatments fail over half of those living with anorexia.
As a society, we turn our backs on them too. Support groups don’t want the 60% who are not committed to full recovery. Relationships with friends and family slowly disintegrate. Anorexia becomes the only reliable companion. Can you blame the individual for finding solace in her embrace?
Through my time in intensive treatment, I have lived alongside some of the most severely anorexic individuals you could fathom. I have cried with them, screamed with them, and laughed with them. I have witnessed their torment, and, occasionally, I have watched them win.
Based on statistics, I know that the majority of them will never “fully recover”. Some will manage their illness and live fulfilling but somewhat restricted lives. Others will fall so far into the deep abyss that they will never feel the light of day. I have lost friends to this illness, and am haunted in waiting for another to be ripped from this earth before their time.
Theirs are the stories that don’t get told. These stories may not be easy to stomach, they may not leave you with the warm sense of satisfaction you get from witnessing a hero’s journey. They may, at times, fill you with more frustration than hope.
But the lives of these beautiful women and men, their families, and their treatment teams are just as worthy as yours and mine. They are deserving of their moment to speak, and they deserve to be heard.
Their stories are real, they are raw, and they are painful. But we need to listen if we want to understand, and if we want to accept these people for who they are.
Food is not the medicine for this horrific disease. Love is.
And there is hope, there is always hope.
Will you listen?
Thank you for reading ❤
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