The trauma of having an eating disorder

It wasn’t long after I returned home to Michigan that the nightmares started. They weren’t overtly frightening or threatening- no boogeymen, no one chasing me. Instead, I found myself back at the treatment facility where I had spent the previous seven months. I was returning a failure. I had relapsed somehow, although I couldn’t tell you how or why. I was just back there, with people telling me what to eat and when, flushing my toilet, having me hop on a scale, and telling me, a 26-year-old, when to go to bed. All within the same dream, night after night, I found myself inexplicably being discharged and readmitted, a breathless, whirring motion of walking around the facility’s wrap-around porch.

They talk about the revolving door of eating disorder treatment, but they probably never thought it could happen half a dozen times in a few short hours of REM sleep.

My time at the program did not end well- I had discovered that about half of the 10-12 women in the program had been reading my journals out loud to each other every night while I was asleep. After denting a wall with my fist, I walked out and didn’t really look back. Except in my dreams. Then, I looked back. My mind had become stuck in that scenario, in that place and time.

It wasn’t a Trauma-with-a-big-T. After a while (and a few other unlucky walls), I got over it, inasmuch as someone ever gets over that much of an invasion of privacy. I wasn’t housebound or losing vast quantities of sleep. I didn’t have flashbacks, though those would come later, with another event. I was angry and bitter, sure, but I never thought of myself as traumatized.

Except I was. No, it didn’t give me PTSD, but that didn’t mean I hadn’t experienced trauma.

Talk about the intersection of trauma and eating disorders, and the entire body of literature focuses on PTSD and the traumatic events that can help trigger an eating disorder. All of which is very real and very much worth studying, but it doesn’t address a separate but related question: how much are eating disorders themselves a traumatic event?

You have to eat when you’d rather not and/or not eat when you’d really like to. You have people poking and prodding and weighing you. There are the hospital admissions, the inane comments from friends, family, and total strangers (“You have anorexia? I’d like a little of that, tee-hee.”). The loss of school and jobs. The list goes on. For some people, these become Trauma-with-a-big-T, creating full-blown PTSD. For others of us, it’s a trauma-with-a-little-t. They scar, they haunt, even if they don’t completely incapacitate.

Even parents can join the fun. Many parents I’ve spoken with have PTSD symptoms from the yelling and screaming, the food refusal, the torment of watching your child turn into a haunted spectre of his or her former self. So many have written to say, “My house has become a war zone.”

Indeed.

Earlier this week, a psychiatrist published an essay in the New York Times about The Trauma of Being Alive. “While we are accustomed to thinking of trauma as the inevitable result of a major cataclysm,” writes Mark Epstein, “daily life is filled with endless little traumas. Things break. People hurt our feelings. Ticks carry Lyme disease. Pets die. Friends get sick and even die.”

Trauma is not just the result of major disasters. It does not happen to only some people. An undercurrent of trauma runs through ordinary life, shot through as it is with the poignancy of impermanence. I like to say that if we are not suffering from post-traumatic stress disorder, we are suffering from pre-traumatic stress disorder. There is no way to be alive without being conscious of the potential for disaster. One way or another, death (and its cousins: old age, illness, accidents, separation and loss) hangs over all of us. Nobody is immune. Our world is unstable and unpredictable, and operates, to a great degree and despite incredible scientific advancement, outside our ability to control it.

Understanding that an ED, in and of itself, can be deeply traumatic didn’t occur to me until years later, long after I stopped trying to kick unoffensive walls into a pulp. It didn’t feel big enough or significant enough to be called, ipso facto, a trauma. I felt like a baby, making a big deal out of nothing. My experiences weren’t nearly as scarring or awful as others I’ve talked to, but that doesn’t mean they didn’t leave scars.

Having an eating disorder and getting treatment for it is deeply traumatizing, and there’s not much of a way around it. It’s not like the traumas we’re conditioned to think of as traumas (rape, torture, abuse), so we don’t acknowledge it as such. But the facts remain that many people, even those for whom the ED is part of a distant past, have these traumatic memories. They’re real, and they deserve help.

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42 Responses to “The trauma of having an eating disorder”

  1. I keep telling myself that I’ve never been as ill as other people, ergo it doesn’t count and I should just pull myself together. Ignoring the fact that it’s over a decade of small, almost imperceptible traumas that are harder for my brain to cope with than the big relapses. It’s the daily stress of every second in recovery that makes relapse so tempting, because I know what I’m doing when I relapse. And not acknowledging that daily stress is traumatic doesn’t help. Maybe I should just give myself a break 🙂

  2. brilliant post, Carrie. The NYT article got me thinking about trauma with a little ‘t’ also. I am reading The Noonday Demon by Andrew Solomon (yes, a little late to the party…book was published in 2002) and its exploration of depression/trauma/the brain is interesting (gives much fodder for thought). It takes years to follow the tendrils of this illness on all affected (sufferers/family members). Trauma is related to so much of it. The trauma associated with being ill/ the trauma associated with the phase of ‘actively’ fighting it/ the trauma associated with working through recovery/ the trauma associated with the legacy of what it all means when it is ‘over’. All different and all very real. Add to that the shifting consciousness that happens over time and it is very complicated. It is no wonder the working through of it often happens in dreams and journals.

  3. This is such a good post. I really felt it was so insightful. I’ve been suffering from an eating disorder for 12 years now and it has been very traumatic, not only for myself but for my family. The fights, the daily stressful eating regimes, hospitalisations, illnesses, psychiatrists, lack of understanding, stigma, loss of friends, education, jobs and opportunities. The experience of an eating disorder is traumatic indeed

  4. Thank you so, so much for this. I have things in my past combined with more than a decade of dealing with the disorder that I recently (the past few years, I guess) have accepted as legitimate trauma. The flashbacks. The dreams. The fear of things happening again. It really keeps me stuck, and to hear someone else has gone/is going through this slightly validates my own issues and difficulty in accepting that “T” label somehow. Just…thanks.

  5. Thank you for this post. Recovery is deeply traumatizing. Being weighed regularly with my back to the scale is humiliating. As an Aspie, having people stand too close feels violating anyway- and so when my dietitian stands next to the scale to weigh me and doesn’t allow me to look, I feel physically violated (I can feel her body heat and it burns the whole right side of my body), emotionally violated (she is studying and recording my personal information- it is MINE- and she is stealing it and keeping it in her notebook as if it is her own), and psychologically violated (I am almost 40 but am being treated like a child). Those numbers were what made me feel sane and in control for decades. And she has not just ripped them away from me but regularly hurts me by taking them for herself and withholding them from me- all while standing so close to me that my skin burns. I fight panic and nausea and dissociation every time I am weighed. And this is just one tiny example of recovery trauma. There are daily, sometimes hourly traumas at home as I force food past an overactive gag reflex- sometimes pressing my hand against my lips hard to keep the food from coming back out as I gag on it. Still just a piece of the whole picture. Recovery sucks. We feel violated and traumaized by others and confused and traumatized by ourselves.

    • And that’s just the trauma of recovery- so much trauma from the ed before recovery as well. The relationship w/ the ed voice can feel very much like an abusive relationship, complete w/ Stockholm syndrome and all, as the voice screams at you, belittles you, and you have to depend on its permission for your very survival. You cling to it and are terrified of it at the same time. Talk about living in a constant state of trauma. I have found that w/ a decent amount of weight gain, this recurring traumatic event has diminished significantly.

  6. Thanks for this, Carrie. I have haunting memories of a January school trip to San Francisco – walking around Alcatraz Island having eaten almost nothing all week, wrapped in four or five layers of clothing, utterly miserable, the coldest I’ve ever been in my life . . .

  7. Hey Carrie –

    This is something I spend a lot of time thinking about. I’ve blogged a bit about it and you and I have chatted about it briefly in the past. I wish it was discussed more. I think its really important to recognize that the ED experience “counts” as trauma and I wish professionals addressed this with patients in recovery. Recognizing that I was dealing with PTSD symptoms was the first step in dealing with it but I had never heard anyone talk about that being a common experience in recovery.

  8. This makes me thing of chronic, persistent trauma versus one big huge scary acute trauma (like a rape or accident or something). There is something deeply damaging to the mind/psyche etc. about ongoing, constant abuse – like an eating disorder, or any long-term medical condition. I wonder what kinds of trauma research has been done on the “traumatic” elements of daily life with chronic illness, and how that compares to outcomes of ore “conventional” acute trauma.

  9. Oh- and I CAN’T BELIEVE THOSE GIRLS READ YOUR JOURNAL. That’s just downright bitchy. There’s no excuse for it at all. I am so sorry, Carrie.

  10. I have this problem. It is a real barrier to health treatment, especially when I am severely depressed and require what are usually lengthy hospitalisations. In fact, during my last relapse (with depression), I was discharged not because I was well enough to go home, but because the long stay (4 months by that time) combined with rapid weight gain from medication was retraumatising me and they were genuinely concerned that I would relapse with AN as a result. I was going out of my mind.
    My parents, particularly my mother (who unfairly blames herself for me getting AN), feel incredibly guilty about this. I used to harbour a lot of anger toward them, but now that I’m older I realise what else were they meant to do?! Their daughter was very ill and even if I had been medically stable, Maudsley wasn’t really around back then and it too would have been traumatising, assuming that we would have been candidates.
    My psychiatrist says that trauma is very common with any serious illness. It’s frequently seen with cancer patients, for example. The illness itself is traumatic and the treatment can be traumatic on top of that. It’s not necessarily PTSD, but it is a serious issue and not unique to mental illness.

  11. This is an awesome post. I can relate to little ‘t’. I moved to uni at the beginning of this year, and I feel like a big effort was made to help me to deal with things like scales, the gym, and other people’s diet talk etc., but no-one quite prepared me for the fear I feel at hearing the cleaning lady wheeling her cart around the corner (the scales in hospital were on wheels). It’s really the “normal” things that I now associate with that awful period of my life that freak me out!! I’ve been told with time my brain will rewire itself, and instead of thinking “WEIGHT!!! RUUUUUUUUUN!!!” when I hear wheels on lino, I will think “excellent, my room really does need to be vacuumed.” I feel like what you’re writing about is so relevant, thank-you!!!

  12. Thank you for addressing this important but often overlooked topic. The experience of having an eating disorder or another psychiatric illness, such as major depression, can be deeply traumatic for the sufferer. The illness is incredibly disruptive to a young life. Many kids have to leave school and stop participating in their favorite sports or activities. A lot of kids lose many or all of their friends. Some people are hospitalized or sent away to a treatment center, isolated from their families. So many patients are blamed for being ill, either overtly or subtly, and this is terribly traumatic. Loved ones sometimes react with anger, blaming or shaming the patient, which makes him or her feel even more depressed and helpless.

    Then there is the trauma of starting over once the illness is sufficiently under control – returning to school and sports, having to make all new friends, feeling lost and miserable when everyone thinks you are supposed to be all better.

    This trauma, if present, needs to be acknowledge and addressed in order for the patient to move forward in life. It should not be dismissed or minimized. No one should have to go through life haunted by this experience. It can be reframed as an experience of survival that builds resilience and self-awareness. And, by the way, being diagnosed with an eating disorder or other serious illness does “count” as a big-T Trauma worthy of PTSD diagnosis, if the symptoms are present.

  13. Yes. Yes yes yes. And the months surrounding a hospital admission are no less traumatic than the time actually spent in the hospital. Starvation (whether by “choice” or not) is inherently traumatic. Seeing the people you love totally destroyed and feeling entirely at fault for this but being unable to stop it is a whole different experience. And then, of course, there’s refeeding. You’re stripped of everything you had, put in a scary environment, and forced to face your biggest fear 6 times a day. I’ve never been able to really explain this, but I’ve always felt a sense of safety in my anorexic body (even when everything else in my life was falling apart because of my eating disorder). That sense of safety is taken from you and replaced with something really terrifying when your body feels like it is growing out of control and someone else is in charge.

  14. My experience in inpatient care was horrible and I’ve come to realize that being involuntarily hospitalized (I was a child and my admission to the hospital was a total surprise to me) was much more traumatizing than any of the problems I was ostensibly there for. There are certain cleaning chemicals and types of fluorescent lights which give me panic attacks. And I have a whole host of other PTSD type things that I am sure are from treatment rather than from the disorder itself.

    Which…sucks. But without treatment I probably would have died. So, I dunno.

  15. In my opinion, Family Based Treatment (also known as the Maudsley model) is much more humane than the kinds of treatment described by Carrie and others on this thread. In FBT, sufferers are not sent to treatment centers or hospitals where they are separated from emotional support, isolated, and likely to be traumatized. Instead, they remain with their families, communities, and friends and generally live a normal life. M/FBT has been proven to be more effective than any other model in treating anorexia nervosa in sufferers between the ages of 12 and 18. It is both more humane and more effective than the kinds of treatment described in this blog post.

    • And you’re entitled to that opinion. It’s entirely possible that FBT is less traumatic for some, but we don’t really know that.

      But the fact is that even using FBT, hospitalization is not infrequently required. Nor are all families able to successfully use FBT, for whatever reason, or even have it available. Hospital and residential treatment can be isolating and traumatizing, and it can also be life-saving.

      Even refeeding at home is traumatic in its own way, having to face your biggest fear several times a day, having your freedoms curtailed, not understanding why you have to eat. All of this is also traumatic.

      The point of my post wasn’t to advocate for one form of treatment over another, but to point out that having an eating disorder, irrespective of if/how it’s treated, is frequently a traumatic event for sufferers. Even those that are treated with FBT.

      • We can all agree there is trauma involved in having anorexia nervosa and recovering from it. So what do you propose we do about it, Carrie? Please be specific.

        • For starters, acknowledging it, and getting sufferers appropriate help where needed.

          • What do you recommend as “appropriate help” and how do you determine when it is “needed”?

          • I’m not a therapist–that would be left to the patient, their family (if applicable), and a therapist to decide the point at which specific treatment is needed. Different people will have different levels of symptoms and different thresholds for tolerating those symptoms. Most people probably won’t need therapy above and beyond what they’re already receiving for the ED, but I also have known plenty of people who would benefit.

          • I honestly wouldn’t put too much faith in the ability of professional therapists to help. After all, professionals have not developed any proven methods for treating anorexia nervosa in adults, and for children and teenagers the most effective method is to put the eating disorder back in the hands of parents to resolve. In these circumstances, it’s difficult to see how professionals would be able to help someone who suffers from trauma associated with treatment, especially since, as described in some of these posts, the trauma often originates with treatment from professionals in the first place. Furthermore, since post-eating disorder trauma is not a recognized diagnosis, any involvement by professionals will probably not be covered by insurance, so involving a professional therapist will mean parents will be confronted with even more costly bills and financial stress. Is it worth it? I doubt it.

        • I agree with Chris that FBT is less traumatic than other treatment methods. I think the ideal time to address trauma resulting from an ED is in Phase III of FBT. The goal of phase III is to get back on track with normal adolescent development. If a patient is traumatized to the point that it impacts his/her ability to continue with normal adolescent development, then it needs to be addressed in Phase III in order to achieve the goal of normal adolescent development. Parents are usually good at determining whether their kid seems developmentally on-track or not.

  16. Thank you for this post. I’ve often looked in to whether there’s research on the traumatic effects of having an ED, as there is on trauma from psychotic episodes, and I’ve been frustrated that studies only seem to consider the opposite direction of effect, as you pointed out. I don’t fulfil the criteria for PTSD by any means, but I frequently get extremely anxious and panicky when I’m reminded of my worst periods of illness. I go so far as to avoid foods I ate at that time, clothes I wore and places I used to exercise or spend a lot of time. Not because I find it ‘triggering’ in an ED sense, but I guess I find it triggering in more of a trauma sense. And I have nightmares about somehow ending up back in that state again. It’s not something I’ve ever really been able to explain to people…

  17. I will probably never know exactly how having AN was traumatizing to my daughter, but it surely was. That was evident in her fear some nights that made her come and sleep on the floor of my bedroom. As we put the weight on her, this fear diminished.

  18. Hi Carrie, I’m coming in late… You have given me lots to think about. From what I’ve seen in my daughter, the ED was such a cause of fear, and such a complete upheaval of her 10-year old life, how could it not be traumatic?

    And the treatment itself – being made to eat – it’s so tough, and when you’re a parents, it’s easy to think you’re causing harm when your child is so scared or angry.

    Yet I think the times we caused our daughter most suffering was not when we asked her to eat, but when we failed to understand what was going on for her, as most of us do at the beginning of the illness.

    I am really hoping that ‘trauma’ can be a synonym for ‘painful feelings’ (that pass) rather than for ‘condemned to long-term suffering and horrible memories’.

    It IS useful to use the word trauma if suffering persists, because then there are validated therapies. Like EMDR, which only takes a few sessions and you don’t even have to go over and over lots of painful stuff.

    According to Martin Seligman (in his book ‘Flourish’) there is such a thing as Post-traumatic Growth and it’s pretty common. Some people move from pain to something that strengthens them. If I remember, gratitude comes into it too.

    My daughter is full of gratitude for the kindness of nurses who, for 11 months, got her to eat in hospital. That’s what she remembers the most. The love. The complete acceptance, non-judgement: these nurses – who could catch and stop ED behaviours and who made sure food was eaten – were so very kind, and fun.
    So I don’t think my daughter is traumatised and I think it’s because although she had a terribly tough time with anorexia, most of the way, kind people held her hand.

    I am thinking of all the parents who are presently helping their child to eat, and the child is terrified, and the parents still ask them to eat, and the message is, feel the fear and do it anyway. Fear is not dangerous.

    I think (I am hoping… tell me if I’m right) that as long as the person who is asked to eat knows that there is love and respect and empathy, they’re more likely to get emotional growth than trauma.

    You yourself, Carrie, what a gift you have created out of many of your experiences of suffering, with – among other things – a book that is like none other and that is surely helping other sufferers be treated with respect right now.

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  22. Hi there
    I am sorry for coming in so late :p. Thank you very much for this post. This is exactly what I am going through atm and what i think is just another of the many things involved in the experience of eating disorders that is overlooked. Always a comfort to know there are others out there.

    much love <3

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  25. I remember being certain that I was going to die from my eating disorder and the trauma of having worn down my front teeth to nubs because of all the stomach acids. Eating popcorn or any food that was remotely crunchy I feared having chunks of teeth break off, which did happen on occasion. The trauma of all that “decomposing”, like death itself and the knowledge that my efforts to stop were failing OVER and OVER again. This was an abusive relationship and I was victim as well as the abuser. The splitting of self that occurs has to cause some real psychological damage. It took me years (after all my dental surgery, reconstructions) before I was able to smile and not feel panic. I still feel like everyone sees me as sick, or like an addict. When I get a cold or the flu I panic and feel like a loser or a failure…I guess it just takes me back to that place. Thanks for the post – I feel there are real PTSD effects in recovery.

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