Anosognosia means never having to say "help"

Everyone who knows me well knows my favorite word: anosognosia.

It means the loss of ability to perceive the nature or severity of one's medical condition. And it applies to eating disorders in a special way: because friends and family and even many eating disorder professionals can share that lack of awareness.

Are you shocked that I use a term more associated with head injury and schizophrenia? You shouldn't be.

Eating disorders are more disabling and kill more people than any other mental illness. They destroy families, ruin careers, isolate loved ones, and waste the lives of precious loved ones. The issue needs to be treated with the seriousness it deserves, not pitied or shamed. And EDs are arguably no more a conscious choice than other brain disease.

The difference is that eating disorders can be successfully treated. But it requires seeing them for what they are: a real biological condition. Reparable brain damage which compels patients to behave and think in such a similar manner to one another while ill that it could come out of a playbook (one we can read in the Minnesota Semi-Starvation Study). A temporary set of thoughts and behaviors IF we recognize it and stop it.

And by "we" I mean parents and friends and clinicians and the media and the public - not the patients. Our job is: safety, nutrition, understanding, skills, love, time - listening to the needs of our loved ones, and not their words.


  1. An-os-og-nosia, an-os-og-nosia, an-os-og-nosia...

    Oh how I wish I could learn to pronounce that when emotional.

    The second step, with some of the professionals I've come across, would be to tell them what it means.

    After that, of course I would still have to argue the case that it applies in eating disorders

    Back to the pronunciation practice...

  2. I know you're big on ED's not being a choice and I'm not disagreeing with your...well, until it comes to myself. I feel like I became this way, I did this to myself and I had control over the development of my eating disorder. Do you think that's something all people with EDs feels?

  3. Yes, I do. And naturally, so, as we want to make sense of our experiences - I think it is the same in depression for example.

    This doesn't mean we don't have ANY agency or insight, though. I think that plays a role, but I believe the time for that is after one has fully been healed in the brain.

    And it plays a huge role in STAYING well once you are.

    How are you doing?

  4. Very interesting stuff. I enjoy reading your blog.

    I'm doing "fine," though the meaning of that is always questioned by many.

  5. Why do you think they question it?

  6. Probably because I always say "fine," though sometimes I do say "ok." I think I just dodge the question all together. Like when my therapist asks me how I'm doing I always say "fine" but I know she really wants to know HOW I'm doing. I guess I don't really know the answer, though I did somewhat answer the question today when she asked.

  7. Another word I really get a lot out of is "alexithymia" - trouble identifying one's emotional state. Could that be a problem? (and a solution as well - a problem defined is a problem one can chase into a corner and work on!)

  8. That could be a problem. I often feel like I don't know how I'm feeling.

  9. That is a hard thing to deal with!!

    I noticed this with my daughter as well, when she was ill. It got MUCH better when she was medically healthy and had time for brain repair. Now she's pretty darn GREAT at identifying her thoughts and feelings.

  10. That's why I'm always "fine."

    I'm medically healthy, though I'm sure my body/brain could use some more food than I give it.

    I'm glad your daughter has come so far and is doing well. Must be so hard to watch as a mother. I can't imagine how my parents feel. It kills me to think about.

  11. "I'm medically healthy, though I'm sure my body/brain could use some more food than I give it."

    Now, I see those two things as mutually exclusive. You can't be medically healthy (or able to heal and get free of ED and alexithymia and anosognosia) until you ARE fully fed consistently.

    By not eating enough you stay stuck in ED thoughts and behaviors.

    That's the way I see it.

  12. There is a part of you which is not stuck. Or you wouldn't be reading MY blog.

    Is there anyone in your life you can turn yourself over to?

    Someone the anosognosia can't fool?

  13. No, I can't turn my life over to anyone. I wouldn't do that. I try to keep as much hidden from my parents as possible but I think that might worry them more. Every time I go home I fear that they're going to ask me how things are going and if I'm still going to therapy and stuff. I just started going three times a week, but I'll never tell them that. Then they'll really think something's wrong with me.

  14. I mean this in a very caring way: There IS something wrong with you. You are ill, and stuck in the illness by the symptoms. It isn't your fault.

    Your therapist team and your family can't help you unless you let them. And your anosognosia is holding you back. You can recover - fully recover and live free of your disorder, but you need to regain full brain function. And you deserve help doing it.

  15. The last thing I want is for my parents to worry more and think that I'm falling a part or unhealthy or something. I'm fine, okay, that might be an overstatement, but I'm not dying or anything. They have enough to worry about anyway, they don't need to worry about me. I'm almost 31 yrs old. They shouldn't have to worry about me.

  16. Are you protecting them, or their image of you?

    Because it would seem that the image they have is incorrect.

    I don't know if this makes sense to you, but our conversation seems to me to be an illustration of anosognosia. You don't feel sick enough to warrant concern or help. Do you have to be "dying or anything" to deserve out of your eating disorder? Being 31 means you have many, many years ahead that could be lost or ruined.

    Or is it silly to try to talk you into help? I didn't give my daughter a choice to continue her ED behaviors, because I didn't see her as able to be talked into anything: she was ill and anosognosic. And yet here, on the anonymous Internet, I'm hoping against hope that I could say ANYTHING that would help you...

  17. What? No, I'm just kidding, let me re-read all of this...

    I am protecting them from hurting. I don't want to see them hurt at all because that kills me. I also do sort of have the image (maybe given upon myself) of the "perfect one."

    I don't feel "sick." Sometimes I do realize that I do have a problem, but for the most part I think I'm just used to being this way.

    It's not silly to try and talk me into help, but I go to therapy 3 times a week, what more help could I possibly get?

    I hope I'm not sounding difficult, because I don't mean to be.

  18. You don't sound difficult at all. You sound introspective.

    Therapy three times a week - that's hard work.

    But begs the question: therapy three times a week on a brain which is not fully fed?

    Is your clinical team also making sure you are not just "not dying" but optimally fed to a healthy weight range, avoiding purging and overexercise?

  19. I just started going 3x because I thought it would help me open up more, it seems to be working...I'm on my third week of it.

    I don't really have a "clinical team," just a therapist. I don't purge. My T would say that I "overexercise." She would also say that I'm not at a healthy weight, but I think I am. I'm only 5 ft tall. She almost "Fired" me when I went below 100.

    You're so quick with your responses.

  20. "I'm almost 31 yrs old. They shouldn't have to worry about me."
    Palmtreechick - I'm afraid it comes with the territory. Parents worry about their children. My dear friend Joan, aged 82, was busy worrying about her eldest daughter who was under great pressure at work but as she said "it will be better when Margaret retires" - when your child RETIRES! Is that when you stop worrying about her? Nope, Joan's worrying about Margaret's pension now. And the more Margaret tries to keep her (relatively minor) struggles secret, the more Joan worries, the more Margaret opens up, the more Joan feels empowered to do something other than worry.

  21. Marcella is so right. Parents don't want to be relieved of worry for its own sake, we want to not worry because all is well!

    You're worrying more about maintaining their (false) security than your own life/lifestyle/future-threatening illness.

    Part of you can see the dissonance of the situation, and how your illness is guiding your logic - that part can reach out to SOMEONE.

    Why isn't your therapist insisting on a team which includes medical restoration (not just monitoring)?

  22. This is the frustrating thing about having the disorder as an adult. As much as you want the help at times, it requires that you ask for it, AND that you continue to willingly accept it. A child doesn't have to ask and they don't have to willingly accept it. It's okay. They'll still get it anyway. As an adult, we have to want it and can't ever waver.

    Sometimes, it's frustrating to hear how great programs like Duke are now. I was there 4 times when I was a teenager. But that was in the early 90s and they were completely clueless back then.

    I feel like they've discovered an effective treatment, but those of us that grew up as they were discovering it, are just out of luck now. I wish they'd do more research on how to apply it to adults, or some other therapy that's just as effective.

    Just venting - sorry.


  23. Tara, well put. And me, too on the need for research!

  24. I don't know why she isn't insisting on a team, maybe she doesn't think it's necessary because my medical condition is fine.

  25. I should add, I have had 4 concussions in less than a year and a half, so maybe the word anosognosia suits me more than ya think. ;)

  26. PTC,

    Therapy without full medical recovery is unfair to you. You should be in a coordinated team - medical and therapy. A doctor who treats patients with an eating disorder without working with a therapy team - or a therapist treating ED patients without ongoing communication with medical experts - isn't serving patients well.

    I don't know how far from medical WELLNESS you are, but all the insight in the world can't make up for that.

  27. I hear what you're saying, but I think if my T thought I was in any physical danger she would have me see a physician. In fact, in the past she said she wouldn't see me unless I went to a doctor, though that was because I had a concussion and had been having symptoms from it for a while.

    I'm a couple pounds under what her "charts" say I should weigh, but she would like me to be 10 pounds more. Never will that happen!! She frequency mentions osteoperosis to me, so I know she worries about that, but I don't think she's too concerned about anything else.

  28. As long as your eating disorder is in control of your weight and behaviors, your therapy seems to me to be swimming against a very strong tide. You deserve better.

    I so wish you were in the care of a team, and an environment, that didn't allow your brain disease to hold you in illness this way.

  29. Many times I wonder if I'll ever be "normal" again and kind of doubt it.

  30. PTC,

    I'm curious. If you were reading what you've written here and on your blog written by someone else - what would you advise them?

  31. I don't know, probably just suggest they go to therapy, and I'm doing that. I know people want me to go IP but that's completely out of the question.

  32. aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!

  33. This is the frustrating thing about having the disorder as an adult. As much as you want the help at times, it requires that you ask for it, AND that you continue to willingly accept it. A child doesn't have to ask and they don't have to willingly accept it. It's okay. They'll still get it anyway. As an adult, we have to want it and can't ever waver.

    Tara you are SO right - it's frustrating to be hollering from the sidelines too!

  34. I don't mean to be frustrating. I'm doing what I can (for the most part) right now. I don't want my problem to be anyone else's problem. I don't mean to be difficult and complex. I know I'm a bit in denial, I'm told that quite often. It is frustrating, I know, and I know I'm frustrating to others and I hate that. I know you are all just trying to be helpful and I AM listening.

  35. I don't think Tara was describing you as frustrating and I certainly wasn't. It's the system (seemingly all systems when it comes to treating adults) that expects perfect insight and compliance from patients just because they are over 18 and completely ignores the fact that their illness carries with it a degree of anosognosia which makes perfect compliance impossible - if it was they wouldn't have the illness and wouldn't need the treatment.

  36. Oh Marcella, sorry, I didn't mean to imply that I thought you guys were calling me frustrating. I know how frustrating EDs can be for people to deal with. Even though I have one, I still get so frustrated with my friends who have them and are doing things that they shouldn't be doing. I get it.

  37. Thank you Laura and Marcella.

    Palmtreechick, I don't think Laura said "aaaaaaaaaaaaaaaaaaaaa" because she was frustrated w/ you. I think she said it because you're response of "I don't know, probably just suggest they go to therapy, and I'm doing that," is the typical way of thinking about this disorder, which she's trying to change.

    Think of it this way:
    If I had a child w/ diabetes and she was afraid to take her insulin shot, I wouldn't send her to therapy in order to help her discover why she's afraid or to help her gain some kind of mental strength so she'd stop being afraid. I'd just give her the shot. Now, if she was so frightened that she was fighting and have anxiety attacks, and nothing I said/did eased her anxiety, I *might* consider putting her in therapy. But I would do that *AFTER I GAVE HER THE SHOT!*
    This isn't how things work w/ EDs though. When an individual is scared to eat, we send them to therapy, and usually JUST therapy - as if therapy alone is somehow going to put nourishment into the body.
    Therapy can't nourish the body anymore than it can make somebody produce more insulin. A diabetic MUST take insulin. An individual who is malnourished MUST take in nutrients.

    SOMEtimes, therapy can convince somebody to do better w/ eating. Many times it doesn't. Even the times when it does, it's not from the start. It takes a while. And during that while, the person remains malnourished. A malnourished brain usually doesn't respond well to therapy. Although things can be taken in, it's hard to put the lessons into action. This is why Laura stresses nourishment first, or *at least* at the same time.

    I know you keep coming back to being at a near normal weight. However, that's not what it's all about. It's about being able to freely eat a variety of foods w/out eating disordered thoughts or behaviors.

    All of this is often difficult to achieve though. There aren't always professionals nearby that are experienced w/ treating EDs; insurance doesn't always pay; support from family/friends isn't always available; and, as I mentioned above, if an adult doesn't ask for the help, it isn't given.

    Anyway, I hope things get better for you soon, and I hope you're able to enjoy your Thanksgiving.

    Take care,

  38. Hey Tara,

    Great analogy. Thanks for that. It makes a lot of sense.

    I'm very greatful to have found a T who specializes in EDs and also works for a well established intensive outpatient program. I'm so lucky and am very greatful for that.

    I will think about what you're saying some more.

    I hope you have a Happy Thanksgiving as well.

  39. Hope your holiday was good, and that things get better.

    I don't find YOU frustrating at all. I care and sympathize with your experience. And, as you know, I don't believe you should HAVE to be in charge and wish someone would protectively take the choices away until YOU are truly in charge of your own life and not ED.

  40. I wish it didn't have to be so difficult.

  41. It is hard, and unfair. Let someone else "do the thinking for both of us" for a while?

    You have a long and easier life ahead of you after you are free.

  42. Would have been nice to not stress out about Thanksgiving dinner and enjoy the day...not thinking about weight and calories.

    When you say "both of us" do you mean the person and the ED?

  43. Funny - I actually meant let a friend or partner or clinican or clinic or family do the thinking for you both, as Ilsa told Rick in Casablanca...

    But your explanation puts a whole new take on it!

    If one of "you" is to do the thinking for both of you then don't let ED be "you!"

  44. That explains it, I never saw Casablanca. Can't my T do the thinking for me?

  45. Only if you are going to do what your T thinks!

  46. (you should have seen the face I just made) ;)

    It's just so hard when you see the numbers go down and like it. When you're not even trying and they go
    down. I wish it was easier to do.


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