Adults with eating disorders

Is there really an epidemic of older eating disorder patients or is there just an entire generation of sufferers who were failed by the treatment options available?


  1. I can answer this one, though I warn you it will be controversial. I spent 2 years trying to find this so-called epidemic of older sufferers. I interviewed many, many older women in depth about their histories, and guess what I found? *Every single one of them had had some kind of eating disorder as a teen.* Many of them were subclinical and untreated, but there they were. I could not find anyone who had truly developed an e.d. in her 30s or 40s or older.

    I knkow there's a lot of hype about this--even a book about it. But I think it's b.s. myself.

  2. Harriet, I'm not sure you can claim a theory "b.s." just based on your personal experiences with it...

    I strongly believe that there is something to be said for EDs effecting older women. I'll try to tackle this from both the environmental/social respect and not... On the social front, "anti-age" products and advertising are more the rage than ever before, especially targeting older women. This is setting up a truly unattainable standard of beauty which can trigger ED symptoms and, untreated, an ED.

    From the non-environmental side, research has shown that EDs in postpartum women are on the rise as well.

  3. Hey feminist gal,
    It's not my personal theory--it's my experience and research as a journalist. I'm perfectly happy to believe it, if you show me the research and show me the women who are getting sick for the first time in midlife. I wanted to believe it when I set out to write the piece. But I could not find any real evidence. And I still haven't seen any.

    Unattainable standards of beauty are bad, but there's no evidence that they cause eating disorders, either. If they did we'd be seeing much higher rates of illness, don't you think? Instead what we are seeing is lots and lots of disordered behaviors but not eating disorders. There is a big difference. I'd guess nearly every woman I know has engaged in disordered behaviors around eating, but that doesn't make them actively anorexic or bulimic or binge eaters. So I'm not persuaded by that theory either.

  4. Sitting in the waiting room, I've met both. Most of us in our 40's ... have had an eating disorder for the majority of our lives and never got treatment ...

    There is another set that had an eating disorder as a teen, and then either got help, or managed to overcome it in their late teens early 20's ... and then as they approached late 30's ... relapsed

    but ... I've met a few who ...hit middle age ... and had no history of eating disorder whatsoever ... and just ... spiraled into an ED.

    MOST of us, have had it most of our lives ...and it took till our 30's or 40's to admit it.

  5. I think dreaming is probably right - MOST cases of adult onset EDs are a recurrence of a disorder that first manifested itself in the early teenage years (as indeed is the case with the unfortunate woman in the link). Some of them will have had poor treatment in the past, some haven't had treatment at all either because of denial, lack of resources and poor primary care, or because their cases were "subclinical". As an aside our local eating disorders team is not at present able to accept referrals for people with mild to moderate eating disorders because of resources issues, so they have to remain without specialist treatment, or get worse and qualify for it.
    I HAVE met an adult who developed an eating disorder in her 50s as she cared for her elderly parents but her case was perhaps unusual in that she in effect had the magic plate treatment by her mother until that age so when her mother fell sick was the first time she had ever had to manage her own feeding.

  6. My personal theory is that most of the people with the genetic/biological makeup to get anorexic/bulimic when undernourished find that out early in life.

    All it takes is a dip in nutrition, a period of lots of exercise, illness, or a diet.

    The rest of us can do those behaviors - even extreme forms - and not get that ED reaction in our brains that says "I feel less anxious...I like this better."

  7. Just a little clarification of terminology: Epidemic refers to a large number of a population being affect by the same disease at the same time than is expected. There is nothing in the definition that presupposes that all the cases being counted have the same onset. Most epidemiologists would consider a growing epidemic to mean generally that both the incidence (number of new cases) and the prevalence (number of people with the disease in a given population) are increasing.

    The tough part to sort out is: are your growing numbers of cases due to 1) better identification of cases? 2) Changes in the definition/classification of cases? 3) Actual increase in the incidence - are more people developing the disease? 4) Improved treatment and survival? 5) Some combination of the factors above?

    Epidemic is a problematic word since so much of the MSM uses it inappropriately or with hyperbole. However, as a public health issue, there are some legitimate questions here. There is widespread belief that EDs are undercounted - mostly because the diagnostic criteria are so strict, and many believe that most suffers are "sub-clinical" - they have the disease, but have not yet been treated for it. So maybe the epidemic represents cases that have existed but are being identified formally. Maybe, even while "cures" lag, we've gotten to the point where we are extending the duration of disease by avoiding deaths; you don't get cured, but don't die either, like in diabetes or AIDS.

    The estimates are that 60% (+/-10) of the variability that explains EDs is genetic, that still means that environmental contributors are about 40% of the problem. If we accept that their is a continuum of vulnerability, some people are highly susceptible, and others less so. Thus the superficial focus on beauty in women, the pressures of being a career parent, the poor lifestyle habits many Americans have (too many hours working and driving, bad diets, sleep deprivation) may all really be associated with an increase in the incidence of EDs. Say I'm on the "less so" side. Might have been the type to stop eating for a week after a breakup in college, or during finals. But never really developed ED. Now I'm 40ish, have 2 kids, a career, 2hrs commuting each day before becoming the Extramural-Activities Taxi. I'm starting to eat crappy and skip meals from "lack of time". Ditto on sleep. Start worrying about finally getting the last of the "baby-fat" off. So I start taking diet pills ....

    I think this scenario is highly plausable. Moreover, it's one our culture actively encourages - just watch any commercial aimed at the 40-something woman!

    I'm not talking about "causes", but contributors. And I believe that there is a lot in our culture that makes the social environment toxic, and that one of the results of that toxicity is an increase in EDs. Just like if you fill a room with cigarette smoke, and everyone keeps breathing it, more people would develop lung cancers than if exposure to the smoke were intermittent, incidental, or self-directed only.


  8. Regardless of whether the anorexia has been a lifelong condition, or has arisen for the first time in middle age, what does the evidence show about how best to treat it? Can refeeding, supervised by a loved-one such as a spouse, parent, or child, have the same success as with adolescents? Does it take longer for the brain to repair itself in middle age than in adolescence? Has there been any research on this? VTY "a concerned dad"

  9. VTY, there has been so little research - real research - on recovery. It is an excellent question.

    I guess I look at it like brain damage. The longer the damage has gone on, the harder the repair. Or a tumor.

    But I know people who have recovered at all stages, so I don't think we should EVER give up hope. Recovery is worth it and the patient - who doesn't deserve to be ill - is worth it.

  10. "The tough part to sort out is: are your growing numbers of cases due to 1) better identification of cases? 2) Changes in the definition/classification of cases? 3) Actual increase in the incidence - are more people developing the disease? 4) Improved treatment and survival? 5) Some combination of the factors above?"

    One thing we know for sure is that more women at midlife are seeking out treatment. Whether they've had subclinical eating disorders for years or have been actively ill for years or whatever, they are seeking treatment. It's no coincidence that places like Renfrew and Remuda now have special units for middle-aged patients.

    I think a Maudsley-style approach could work with older sufferers if they have the support system to do it with them. I think one of the troubles is that an adult sufferer who gets scared can opt out of treatment legally at that moment, and often does, whereas an adolescent really can't. It presents a catch-22 for adult treatment.

  11. I think one problem is that ED treatment didn't really exist before 1990. I remember reading that bulimia and anorexia were not defined as true disorders until the 1980's. This may be why many adult sufferers have never sought help. They were FAILED by the lack of system, not by the current system.

    Having had experience with adult treatment, I think it IS better if patients choose to recover willingly, as opposed to a Maudsley Method. At this stage they can better use CBT/DBT coping skills are work on issues. There is something powerful about CHOOSING to have scary food XYZ or gaining your weight with the help of a team but under your own power.

    However, I really don't know if young children or adolescents can fully grasp the concept of taking responsibility for recovery.

    And this is obviously not ideal if the adult does not want to recover.

    In that case, what can be done?


  12. Also, this idea that I've been hearing about of getting "partially" weight restored and then released from treatment is ridiculous.

    Anyone who has been close to someone with an ED or HAS an ED knows that anxiety only increases and weight gain only gets more difficult in the later stages of weight recovery and maintenance.

    The program I'm in only settles for 100% weight recovery (defined by a BMI of 20) followed by a 2-3 kilo buffer. They CONTINUE to monitor for six months after treatment.

    Sorry, I know this is kind of off topic, but couldn't discharging people early from these "big" treatment centers contribute to a higher rate of relapse?


  13. I've met very few who developed an ED at a later age. Most developed it when they were younger and never fully recovered or did and then relapsed.

    I don't know the statistics on it, but I wish there were more research on finding effective treatment for adults with EDs.

    I don't know what I think about "choosing" to gain weight, eat, recover. Maybe we should be able to choose to. For me though, it's even harder to make a choice now than it was when I was a kid. Partly because, as a kid, I didn't feel like I had a choice. People were making me eat. But now, I have a choice. And I can't make myself do it. I wish I could. I desperately wish I could. :( I wish somebody could MAKE me. At times, I've even said that aloud, but whenever somebody tries, I just get up and walk away.
    I've been certified twice, but that doesn't work either, because they can only hold me until I'm medically stable, and medical stability is far from recovery.

    I don't know what to do. I've tried to make a choice, and I feel really ashamed that I can't make the right one. I just don't have the strength to and traditional programs haven't helped me a bit.

    I wish there were more options available. I wish more research went into treatment for adults, and into recovery in general.

    - M

  14. Oh m, that's exactly the story I've heard from so many adult sufferers. Please don't feel ashamed. This disease is not your fault, and you should not have to "choose" recovery. You deserve loving unconditional support to help you through the nightmare.

    Please don't blame yourself. It's the medical profession and the law and our culture that are failing you.

  15. A:), that is so ON topic, really. Residential clinics have no trouble getting weight up - but they cannot possibly hold people long enough, in the current insurance atmosphere, to outlast the months of brain repair it takes once you've reached a healthy weight. And insurance also allows very low target weights because of the stupid 90% DSM designation. Your clinic sounds GREAT.

    M, not only is it not your fault, it is a grave injustice to you to put you in the position of having to choose recovery 5 times a day. It isn't weakness, it is the enormity of the task. You deserve respect and support for every step toward recovery you take.

  16. Thank you Harriet and Laura.....

  17. Dear -m,
    I'm guessing your in America, but in Australia they are offering free treatment as part of a research trial for people that have been affected by eating disorders for longer than 7 yrs. As a volunteer telephone councilor it amazes me how many adults are still suffering with an eating disorder well into their 40's, mainly due to poor treatment in the past. I agree with a:) that the system failed these people.
    VTY = I believe the neural connections in the brain become hardwired to ed behaviors. The left side of the brain/frontal lobe (the brains executive control system responsible for planning, organizing and sequencing behavior for self control, moral judgment and attention) continue to develop into the second decade of a child's life. If that child has suffered from an eating disorder which has not been diagnosed/treated quickly and efficiently the behaviours/neural connections become firmly entrenched. Thus the person requires a lot of neural re-programming with whatever modality fits with lashings of support and nutrition.

  18. Harriet - the fact that more older women are seeking treatment sounds like good news to me. Like perhaps some of the shame, stigma, or other barriers to getting care are being erased. But I could see where someone might look at those numbers, and begin to speculate about whether there is a growing number of affected older patients. It is one of the big holes in the epidemiology of EDs and AN; very few of the studies really sort out the age of onset, how symptoms may have changed over time, etc.

    Of course, this information is hard to get because of two big problems. First, the diagnostic criteria for EDs are really stringent; as an analogy, a man wouldn't have prostate cancer until it was a stage III/IV tumor! Also some of the criteria don't apply to all suffers (like, hel-looo! menarche does not apply to males, or most females >55 or <13). Second, the stigma that still surrounds EDs and pyschiatric disorders, coupled with the anosognosia characteristic of AN, means that recruiting patients for trials, or identifying them for epidemiological studies is more than usually complicated.

    It is to be hoped that these obstacles can be overcome, and we can begin to treat EDs using evidence based methods derived from robust medical and scientific investigation.

  19. My epidemiology training is kicking in a little bit here. Part of the reason I think we're now seeing an "epidemic" is that we're beginning to *look* for eating disorders in that population. For so long, ED's were considered a "teenage" thing, and so researchers simply didn't bother measuring it.

    Another part of the reason we might be seeing more EDs in older men and women is that there is more pressure to diet and keep a "youthful" figure. So while there may not have been a trigger earlier in life, there could be one later on.

    Just my two cents.

  20. Fascinating thread and a lot of parallels with autism, and with the question of "where are all the autistic adults"? I'm very interested in the notion of whether there is an "epidemic" of adults with ED: More and more today, there are stories about adults who are diagnosed with Asperger Syndrome in their 20s, 30s, 40s; they simply weren't diagnosed when they were children because there was so much less understanding about Asperger Syndrome, and autism.

    On the questions of an "epidemic" and of "where are all the autistic adults," I co-authored this essay.

  21. I tend to agree with the sentiment that most of these women have been struggling with body & eating issues for decades and should properly be considered "relapsed". I'm 32 and even though it's been 14 years since I was an active bulimic, I still feel like I'm "in recovery". I was able to break free from the unhealthy behavior but I don't feel "cured".

  22. I've had an eating disorder since the age of fifteen and I am now forty-two. I didn't seek help till two and a half years ago.....

  23. Anonymous, it was very brave and heroic to seek help! I'm sitting here cheering for you and feeling admiration.


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