An unnecessary tragedy

The death of any young person is almost invariably a tragedy. But when I heard of Erin's death from anorexia, the tragedy seemed much worse. Not because of the specific cause of death (an eating disorder) but because her death was completely unnecessary.

I've only heard the tip of the iceberg when it comes to this family's suffering for almost 20 years, and it is already almost unimaginable. Even the diagnosis of anorexia can be tragic, but when the system colludes with the eating disorder and gives the family and sufferer the finger, well, that just adds insult to injury.

Yes, some cases of anorexia are harder to treat than others, and Erin's wasn't an easy case. But some cancers are more difficult to treat, and we don't sit around and ask the tumor why it doesn't want to stop growing. Cancer cells keep dividing; that's the nature of the beast, and we don't blame the damn cells, we just do everything we can to keep them from dividing. So why is it that people with eating disorders are fundamentally expected to want and embrace recovery when everything in their brains is telling them to keep starving, bingeing, and purging?

Anosognostic and angry patients aren't easy to treat, and it's all to easy to comply with an anorexic's stated wishes rather than her unstated needs. We all do it- it keeps the peace, allows us to continue in our lives with a minimum of fuss. But an eating disorder can mean that a patient's wishes and desires can become deadly. Patients want to leave treatment prematurely. They want to remain at a low weight. But these are symptoms of the eating disorder rather than true inner desires of the patient. I don't understand why it's so hard to separate these two facts. In Erin's case, the system blatantly didn't separate her eating disorder symptoms from her true needs, and now Erin is gone and there's not a damn thing any of us can do about it.

It's easy to think that at least Erin isn't suffering anymore, that if she couldn't be helped, then it was better this way. Maybe these sentiments are true--I don't know. But as soon as I think this, I want to shake myself in utter frustration. We know how to treat eating disorders. We do. We frequently suck at it, but we know how to treat EDs. Erin didn't have to die. She shouldn't have had to wait to want and embrace recovery before her treatment providers removed every option but recovery. When the prospect of getting better is so exhausting and frightening, and when your brain feels so much better when you are ill, it's no wonder that many sufferers simply find recovery a difficult concept to embrace.

Erin was almost certainly labeled "chronic" and "resistant," which are pretty much key words for "hopeless" and "palliative care." I know I got all of these labels. Talk about depressing and demoralizing--I doubted my own recovery enough. The last thing I needed was someone telling me "I can't help you." What ultimately made the difference for me was not my sudden willingness to gain weight but a therapist who left me with no other option but recovery. By doing this, she was telling me that she believed I could get well.

Erin won't get this chance to get well. Her mother won't get to plan her wedding. Erin's death wasn't a sudden freak occurrence that caught everyone off guard. It was the result of years of illness and years of our health care system's neglecting to properly treat her illness. Her eating disorder killed her, yes, but our fucked up, outdated, and shortsighted medical system played just as large of a role.

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Ana G. said...

"But some cancers are more difficult to treat, and we don't sit around and ask the tumor why it doesn't want to stop growing. Cancer cells keep dividing; that's the nature of the beast, and we don't blame the damn cells, we just do everything we can to keep them from dividing."

This. Exactly.

I don't know Erin's family, but if you do, please pass along my sympathies.

A:) said...

I don't know what we can do though Carrie. I agree we can't sit around and do nothing, but what to do?

I know someone with chronic AN and they have been through every treatment centre in Canada and some in the US. They have been involuntarily refeed via NG tube, PEG tube, etc and still end up maintaining a BMI of 11-14.

I don't know what we can do for individuals like this. Maudsley is certainly one way, but it would be naive to think it works in every case. Even on the ATDT forum there are unfortunate failures and many programs/residential facilities will not keep patients against their will because it triggers other patients. . .

Also, if after months and months of involuntary treatment and long-term weight restoration the patient still wants to die, what to do then?

Your passion is admirable but I don't know if it is feasible. Certainly we should not give up on these patients but there is really no treatment.

Perhaps instead of looking toward physical illnesses we need to look at what happens to severely/chronic schizophrenic, bipolar and suicidal individuals. Perhaps the answer is long term (multiple years) institutionalized care as was done in the past. . .


Cathy (UK) said...

I'm so sorry to hear of a death from AN.. Who is Erin? Is there a link to her story?

I was viewed as a 'chronic' and 'untreatable' case 5-10 years ago - because I had had AN since age 11 yrs and was in my 30s. However, I was then made to believe, by my wonderful psychiatrist, that recovery IS possible.

It's so important to never lose hope. I have a friend who is in her 40s and is very sick after many yrs of AN. She has finally accepted treatment. I am hoping so badly that she will be able to respond to this treatment...

marcella said...

Please pass on my condolences to the family.

A, I agree with you, there are no simple answers, but we MUST surely continue to work towards answers - long term care may well be one of them, it doesn't have to be in an old fashioned institution.

As it is far too many people are written off as non-compliant (which their illness does indeed make them) when they really desperately want help but aren't being offered the help that they need.

Jennifer said...

This has happened in Australia also. My relapse occurred partly due to the upset of working with a beautiful girl of 20, whom the health system deemed "terminal" with Anorexia. They sent her home to die and gave up. I didnt give up and continued trying to help her, until the evil Anorexia took her life. She was 20 yrs old and weighed 39 pounds. It was horrific and I will never be able to make it ok in my mind, just as I will never stop fighting for better treatment for all of us who suffer this illness!!
Jennifer xxoo

mary said...

You have a wise and brave therapist, Carrie. She knew how to deprive the disease of the oxygen it needs to thrive....choice wasn't an option. She wasn't afraid to get her hands dirty and I admire that. ( can we clone her yet?) She couldn't have done it without your trust and willingness to suffer some uncomfortable stages. Please do not undermine your own stepping up to use the weapons, like food, and fight for yourself. This is your win and your middle finger at ED. Please own it!

Where medicine fails we have much new info coming from those who trust their instincts, either as lay folks like myself, along with a great parent/professional group like FEAST, recovered or recovering and all the others who are waking up to a better way to fight this. We CAN win this and we have made a difference. I believe recovery is MORE than goes beyond what we can touch and feel.

We have limits as well. We are human and sometimes treatments fail. I never met Erin and my heart is broken for her and her family. I do believe a part of her, stronger than her anorexia, lives on. I just wish we/someone could have tapped into it sooner for that's the life line that survivors use to find recovery. Life can be so damn hard so we must remember...what we focus on grows. Let's honor ourselves in honor of Erin even if this means taking hold of a helping hand. No giving up! This is a winnable fight.

Ms. Bee said...

My condolences...hearing about someone's death by an ed always saddens me. Keep fighting the good fight, girls. Recovery is ALWAYS possible.

Isn't a common thought among ed patients that "sure, recovery is possible, but I'm the untreatable case?"

Adrianna said...

To Erin and her family:

God bless.

People with EDs are not spoiled kids throwing tantrums, and they are suffering. We can end it.

Anonymous said...

I hope this isn't taken badly. It is indeed tragic that she died. But think of the many people who say of their depression, "if it wasn't for drug X, I never would have gotten better," and think about what would have happened if they lived before drug X was invented. There would have been no cure for them, no hope, no effective treatment. It is heartbreaking, but I cannot want those people kept alive to suffer. We have a lot of different treatments that work for a lot of different people, but there is not necessarily an effective treatment for each individual. It's heartbreaking that we can't save everyone from suffering so that they can live a full life, but it is also heartbreaking when people refuse to admit that and force people to live a life full of suffering.

I do think you are right, that professionals listen to patients "too much" when they say they want to leave treatment. They let them go too easily and the stakes are so high. But they also listen to patients too little when it comes to most everything else, where the stakes are much lower. When I've said, "no, affirmations do not help me, they hurt me," I am not listened to, I am berated for not trying hard enough to affirm myself. If professionals are going to listen less to patients asking to leave treatment, is is much more important that they listen to everything else.

I do believe that there is a point where treatment has to end, where prolonging life is only cruelty. Right now, patients have perhaps too much power in deciding where that line is, ending treatment prematurely. But without listening to their patients more, professionals will never admit when that line has been crossed, when treatment become cruel. As terrible as it might sound, I would rather see extra lives lost on account of ending treatment prematurely than see people forced against their wills to live lives of pure suffering.

Ana G. said...


you said, "Right now, patients have perhaps too much power in deciding where that line is, ending treatment prematurely.

So who gets that power then? Who can tell someone "nope, you're too sick. You can't get better." ?

I don't think I agree with what you've wrtten. You write that at some point, prolonging life is creul. Making someone live and suffer is cruel, yes. Helping someone live and reclaim their life is worthwhile and, I think, possible.

If someone isn't benefiting from treatment, we can't just say, "ok you're too sick" and let them die. We do what we can to help them.

I know you didn't mean offense and I don't want you to think I'm attacking you personally. I just think that recovery IS always possible.. it just may take longer and different approaches for different individuals.

Laura Collins said...

We know the treatment that needs to happen: keep patients safe from their symptoms and restore their brains in a safe and nurturing and therapeutic environment. We just don't do it. Or we do it for a brief moment and then say "Okay, do that for yourself."

It isn't the patients' fault, it is ours. We monstrously underestimate what the patient is going through and tragically over-empathize with their misery.

We have to change: our stance, our laws, our courage. There should be safe places in our homes and hospitals for FULL and lasting recovery.

I'm outraged that we let ED do this and make/let patients be responsible for seeing through ED.

brokenwords said...

This post eye opening. As were the comments. I have a therapist that basically just lets it slide that I've hardly been eating lately and we basically don't discuss. I felt grateful to "get away with it" but now I'm thinking she's not doing me any favors.

mary said...

Brokenwords, You deserve better treatment than you are getting and support towards full recovery. Have you considered switching or looking into seeing a nutritionist to help you set up meal plans with a follow up? Recovery is not easy or comfortable but the rewards are great. Do not settle for less!

Anonymous said...

"So why is it that people with eating disorders are fundamentally expected to want and embrace recovery when everything in their brains is telling them to keep starving, bingeing, and purging?"

I feel like this is the approach my treatment centre takes - that one has to want and be ready for recovery in order to do intensive programs like residential.

How does one get to that stage without proper nourishment? It's almost like they are waiting for you to say you had a light bulb moment and that you are ready for help - but like I said, how does that happen as the illness gets worse?

I really relate to a lot of what you wrote in this post....

Anonymous said...

Ana G. - First, thank you for being someone on the internet who can disagree and present her position without being aggressive about it. I could tell before you said it that you didn't mean offense.

I think the difference between your position and mine is that you believe recovery is possible for everyone, while I do not. Since we are beginning from two very different premises. However, we both rely on compassion to guide us to practical conclusions from our premises, which is a very important similarity.

As for who gets the power to end treatment prematurely: that is a big practical problem, and I don't think we can ever have a perfect solution without being able to see the future. We do already have legislation that gives similar power to psychiatrists and the courts for deciding when to involuntarily commit someone to the hospital and in situations when someone is on life support and the family must decide if/when to end that life support.

Personally, my solution is to have someone I trust be my surrogate decision-maker. She knows where I stand on these issues when I am well, so she will know if my position has changed when I am unwell. She can help me identify where I am in relation to my stated point of no return, and she can help moderate between me and mental health care professionals when they call some of my genuine "even when well" beliefs a product of my illness.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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