Podcaster, writer, rabble rouser...
Interesting.. But these images are not from people with EDs. Alzheimer’s disease, Huntington’s disease, strokes involving particular parts of the brain, schizophrenia and bipolar disorder with psychotic features are all mentioned. Not EDs.
Yes. I look forward to study in all mental illnesses.
Have you watched this yet? http://www.ted.com/talks/carl_schoonover_how_to_look_inside_the_brain.html
I absolutely believe in the concept of anosognosia, and I believe it can occur in some people with EDs, either transiently or chronically. However, I generally see EDs as being more like OCD - and in the latter there is no anosognosia. By definition, people with OCD are aware that their behaviours are out of proportion to the degree of threat, which is why OCD differs from psychosis. Yet OCD can be persistent - because the ritualistic behaviours relieve anxiety - just as in the case of many EDs, including AN.
I'm just a reader of these blogs. Extralongtail, i have read a few of your more recent blogs. I cannot comment on your blog as you need to register and i'm not joining wordpress to comment. You mentioned in one posts about the background of your eating disorder that you went for years without treatment piling up complications and disputing with others that you needed higher care. That seems like a form of anosognosia that i would expect to see in people with chronic ed's. No-one normal would do this.
what is this normal of which you speak? I'm sorry Anonymous, I find your choice of language in your question inappropriate. There is a wide range of what is considered "normal", and sadly, in this country and a lot of the world, it is fairly normal, that is to say, usual, for people with eating disorders to continue to suffer without effective treatment for years. This isn't because they have anosognosia and don't know to present to the doctor (although they may have and may fail to do) but because general medical teams are pretty blind when it comes to recognising the problem even when it is staring them in the face and pretty useless at offering help even when it is asked for (which may be very difficult for the patient to do if previous treatment has been ineffective or actually counter-productive). Perhaps we should set the scans on the medical establishment's brains - what would we find?
Anonymous, I approved your note because I don't like to censor but I will tell you that your tone is offensive to me. "No one normal would do this" is a cold, cold voice.I don't know if I can define "normal," but used in that way it sounds insulting. It makes me want to be whatever not normal is, frankly, so I'm not associated with that kind of objectifying.If what you mean is to ask ELT whether her living without care might have been a byproduct of anosognosia then ask that.I also have to note that avoiding care isn't necessarily a sign of anosognosia. It could be a bad past history of treatment, a distrust of psychology, a difficult health system, inconvenience, embarrassment, a strong sense of self-reliance, a genuine ambivalence about recovery, a conscious choice... I believe anosognosia exists but I am not in a place to decide for another person what role it plays.
I have been diagnosed with an ed myself and have been through IP for AN and had different kind of treatments. I've also stayed away from treatment. I didn't mean any offense. It was a question and i am interested. People with ed's often use the normal thing.
Extralongtail, btw i do like reading your blog. I think the people who mainly read these blogs are sufferers, parents' or researchers/clinicans. I've got an ed myself. I see now how though that word could upset some people especially. It's a word people with ed's though throw around these days. When a friend with an ed told me normals do not do this years ago i just stared at her. I guess it has rubbed off and i will think twice about using that word on public boards again.When i read your post about your experiences and your views on anosognosia, it did make me wonder if there may have been some degree of anosognosia going on with you in the past. I think you mentioned how you denied how ill you were at some times in the past and some things possibly came across as though you wasn't aware of how ill you were at some points in your later life. Like i said i was just wondering. When i had an emergency once, at the hospital i was very distressed and thought i could die. I then started to panic about the weight gain. If i was slightly blinded before about my actions it went for a while when the emergency happened and i could see what was happening and that i didn't want that.When i was first admitted to ip i didn't feel that i was suffering from AN and it took a long time to convince me. Everything now is mitigated through my lw which can get a bit confusing.
Hi Anonymous. To address your queries above - about whether or not I had 'anosognosia': I started with symptoms of AN as an 11-year old. I think I have mentioned in a few of my blog posts that I initially called AN 'this thing in my head', and described it as an 'alien entity'. The 'anorexic voice' (not audible, but powerful thoughts about what I should and shouldn't do) did feel alien, but not dissimilar to the 'OCD voice' I had experienced from early childhood. So at age 11-12, I was able to differentiate between 'normal' thinking and the obsessive-compulsive thinking of OCD and AN. But did I recognise I was ill as an 11-12 year old? The answer to this is that I recognised 'all was not well' in my mind, but I defended my behaviours, which made me feel better by relieving my intense anxiety. That is, my AN was egosyntonic and I didn't want to lose it. What I didn't appreciate was why everyone around me was so worried about me, because I didn't feel physically ill. So, one might argue that I had 'anosognosia' (?)After I had been in treatment for a few months, I did recognise that I was unwell, because I couldn't change my behaviours (i.e. refrain from exercising and eat more) without feeling terrible anxiety and overwhelming distress. This anxiety and distress interfered with all aspects of my life and caused me to isolate myself. By this point I would say that I lacked 'anosognosia' but was found behaviour change far too distressing. You are right that I spent many years (from ages 21 - 39) with untreated AN. Was this because I had 'anosognosia'? No, it was because I had found the punitive treatment I received in my teens so distressing that I was terrified of entering treatment again. It was very obvious to me that I was sick - because I had severe osteoporosis and circulatory deficits. You wrote (above): "....you went for years without treatment piling up complications and disputing with others that you needed higher care". It is true that I went for years without treatment; however it is untrue that I disputed with others that I need higher care. I actually went to see my GP many, many times complaining of feeling faint, exhausted, depressed and unable to cope. Yet, no GP ever considered referring me for treatment for AN. They didn't even consider weighing me! I must have looked awful because my BMI remained between 13 and 16 for 15 years. Goodness knows how I remained alive. Eventually it was hospital consultants who treated me for physical complications of AN who wrote to my GP and advised I be referred for treatment of my ED.
ELT, just reading your description, you have described exactly why *I* mean by anosognosia: "What I didn't appreciate was why everyone around me was so worried about me, because I didn't feel physically ill."Also, when you say "I actually went to see my GP many, many times complaining of feeling faint, exhausted, depressed and unable to cope. Yet, no GP ever considered referring me for treatment for AN." Which I take to mean you asked for help with those symptoms but did not connect them with your radically low nutrition.This is the phenomenon that I am trying to convey to parents: that their loved one may not be able to fully appreciate their medical state despite clear medical consequences. Parents usually can't believe that a person could be unwell and not feel alarmed, and they are confused at why their loved one keeps complaining of ailments clearly connected to the AN behaviors and not seeing the connection and being motivated to fix them. When parents understand that this disconnect is not willful or conscious it can help defuse anger and can help motivate the PARENT to take action.In addition, of course, there are the egosyntonic aspects, the social acceptability of weight loss, the ignorance of clinicians, and the sheer distress of challenging any of these symptoms, and any number of other reasons that add up to an enormous challenge for patients. Again, understanding all that can help caregivers and that is why we try to educate parents about all these concepts.
I am NOT in any way trying to answer for ELT, but one thing that struck me in this was that YES, patients who present to their GPs with symptoms such as tiredness or depression may not connect them with their low nutrition, but the GPs should be able to work it out. However they often can't and that's not entirely because they are stupid (although weighing a patient would be a first step and often isn't done for fear of causing upset). It may be because the tests available to them are mainly self-reporting ones and thus unsuitable for people with Anosognosia OR who don't present in exactly the same way as those who designed the tests think they should. If someone presents with symptoms of diabetes the doctor tests for sugar. If someone presents with asthma he or she does a lung function test. I am certain that there is HUGE debate about which type of test to use and how it should be interpreted in each case but broadly speaking it's simple - if a patient has a sugar level > x s/he has diabetes. Medics attempt to treat psychiatric illnesses the same way, which is good (I've just spent the last three days arguing on the internet that psychiatric illnesses should be treated equally to physiological ones!) but their attempts at scoring depression or eating disorders are as yet pretty crude and rely on the patient to be able to detail the symptoms accurately and truthfully and there are all sorts of reasons as mentioned above why this is difficult. One such test often used is the Eating Attitudes Test. I know that my daughter did several of these tests on line in the months before being admitted, as an emergency, to a specialist unit straight from A&E (the ER) None of them ever suggested to her that she might have an eating disorder because she didn't do any of the things that score highly in the test (exercise DELIBERATELY to lose weight, avoid sugar or fat, feel fat). It wasn't that she was suffering from Anosognosia that was the problem, it was that the medical profession appeared to be because she was "Atypical"
No, Laura, the 'lack of recognition' only persisted for about 18 months when I was a 'child/teen'. The rest of the time I was too frightened/overwhelmed to make behavioural changes. My anxiety was so high that I would feel suicidal. As soon as I returned to ED behaviours I felt better.You wrote: "Also, when you say "I actually went to see my GP many, many times complaining of feeling faint, exhausted, depressed and unable to cope. Yet, no GP ever considered referring me for treatment for AN." Which I take to mean you asked for help with those symptoms but did not connect them with your radically low nutrition."The fact that I was diagnosed with AN at age 12 was in my medical records. I knew full well that I felt terrible because I was remarkably underweight, yet still restricting food and still over-exercising. Perhaps I should have been forthright and assertive and said to my GP "please refer me for treatment for AN", but I was scared. I wanted the GP to do something, but they didn't. I absolutely agree with Marcella above. You can be seriously ill with AN, yet not score high on 'validated' tests such as EAT or EDE-Q. Because these damn tests are 'supposed' to be the 'best' and are based upon an assumed standard psychopathology of AN, then if you don't score high on them you are assumed not to have AN. THERE IS NO STANDARD PSYCHOPATHOLOGY OF AN!
I believe, and I personally am only using it this way, that the 18 months early in your illness is what we'd call anosognosia. We're only talking about where a patient's brain is blinded - not when competing interests are warring. If the patient is fully aware of their declining health and knows why, that's not anosognosia.Back to people with strokes, anosognosia is when the person genuinely believes the affected body part or function is fine and thinks others are batty when they insist otherwise. The person can come up with perfectly logical and sensible "reasons" they are not moving a paralyzed limb - they're not making excuses this is their actual experience.With bipolar and schizophrenia the same thing happens: patients are told they have the illness, they have repeated episodes, but they often "feel fine" and continue their lives without accounting for the illness and are as shocked and frustrated as other people are when the symptoms cause trouble for them. Again, not all patients have anosognosia and it may wax and wane but it is a symptom that more and more clinicians are recognizing and laws are starting to account for.In other words, when a mentally ill patient doesn't feel ill, or ill enough, it may be at least partly anosognosia so caregivers and clinicians may have to recognize that. Certainly, we need to stop getting angry with patients for "failing" to see their illness clearly, and we need to stop lecturing patients as if they are naughty, self-destructive children. We also need to press for full recovery including the remission of anosognosic symptoms.
Laura, I thought this was all very interesting, particularly the brain studies and I went to search on this in pubmed. I really couldn't find any scientific studies of anosognosia in eating disorders or anorexia but it's discussed so often I am sure there must be some out there! I wonder if some more research on this topic might be helpful for caregivers, families, and people with anorexia. A few key studies could draw a lot of attention to this for caregivers that might help them in taking care of their patients and clients and this could be beneficial for families trying to obtain guardianship in severe situations. There are scales for assessing unawareness of mental disorders and I would like to see some research on this in various stages of illness with anorexia. Even in schizophrenics, the degree of anosognosia can vary between patients and I am guessing at different times of the illness so awareness of illness might be shifting sand and very difficult to accurately assess without specific tools. Maybe FEAST should sponsor a study!!!
I don't know of any research on anosognosia and eating disorders, except by other names. The clinical and research observations on this phenomenon are many - but it is being called and measured in different ways.But keep in mind that even in the bipolar and schizophrenia worlds anosognosia is not widely spoken of or accounted for - and rarely by that name. People use the word denial, which I find inaccurate and imprecise. They also use alexythymia and ambivalence and lacking insight. In the real world, however, it is treated as willful, self-destructive, and lying - and THOSE are the ideas we're trying to fight when we use the term anosognosia.It would be good to do research connecting the concepts and measuring them, so we can individually assess a patient's state just as we also measure weight and motivation and other symptoms.
This message was posted on Carrie's blog on the topic of unawarenes.....I looked at a few journals and Walter Vandereycken's Denial of illness part 2 article touches on this. Also, from a neural perspective-as we learn from the "The Fault Is Not in Her Parents but in Her Insula—A NeurobiologicalHypothesis of Anorexia Nervosa" article which is freely available on the net- anosognosia affects Somatosensory cortex which affects Body evaluation.