Monthly Archives: May 2014

Education of Disabled Students: Inclusion vs. Mainstreaming

In his book, I’m Not Here to Inspire You, Rob J. Quinn published an essay on mainsreaming vs. inclusion and why inclusion has failed. He writes that, when he was mainstreamed in the 1980s, he had to somehow prove he was capable of going to regular school, whereas currently disabled students are included in regular education at all costs.

I was mainstreamed from 1999 to 2005. I, like Quinn, had to prove I was capable of being mainstreamed. Unlike Quinn, I was the only student with my disability in my school, which I until I read Quinn’s essay considered a definition of mainstreaming: the school really caters to non-disabled people but allows disabled people in who prove they’re capable.

Quinn considiers inclusion to do a disservice to disabled students because they’re given too much assistance. As an example, he writes about a girl with a similar level of cerebral palsy to himself who was given special assistance in all of her classes, while Quinn had to get by without extra assistance. Similarly, except in a few math classes, I did not get extra assistance. In these math classes, they were older students giving me assistance, not aides.

I understand Quinn’s point about overassistance. However, I see him writing from the point of view of someone who doesn’t have a cognitive disability. He points out that he heard of a girl with Down Syndrome being placed in advanced classes because “the kids are nicer there”. I can understand this erodes the meaning of advanced placements. Besides, I agree with Quinn that kids with disabilities need to be prepared for the real world and therefore as I said should not be overprotected or overassisted. However, this does not mean that students with cognitive disabilities need to be shoved away into special ed classes until they somehow prove they can get by in regular education.

Another objection Quinn has to inclusion is the lack of exporsure to other students with similar disabilities. When he was mainstreamed all kids with cerebral palsy went to the same schoool in the district. This is not what mainstreaming is like here: I was the only blind student in my school. In this sense, I’d love to have been given an education like Quinn’s, having exposure to people without disabilities as well as those with disabilities. In the Netherlands, unfortunately, at least in the 1990s, you either were the only kid with a sensory or physical disability, or you went to special education and were surrounded by students with your disability.

Quinn concludes that students with disabilities, according to him, need to somehow prove they are capable of mainstreaming if they want to be in regular education. I disagree. After all, people with significant disabilities shouldn’t have to prove they have a right to live in our society, right? I know some pro-institution people disagree, but other than in his essay on mainstreaming, Quinn doesn’t advocate exclusion. Maybe he would for those with intellectual disabilities. I for one won’t.

Mass Murder and Autism: I’m Not Impressed

Today, I came across a post on why the new DSM-5 definition of autism may actually be good. In it, the author talked about an apparent mass murder and the associated speculation of the killer having Asperger’s Syndrome. I googled, hoping to find out which mass murder she was writing about, but instead came across a Washington Post article which claimed a “significant” link beteeen mass murder and autism. I read the original study (Allely et al., 2014) on which this article was based, and I’m not impressed.

First, the actual question the authors aim to answer, is inverted. They research whether a significant number of mass or serial killers have autism and/or head injury. They found that this is so: roughly ten percent of the mass or serial killers the researchers read about, had suspected or diagnosed ASD, and a similar percentage had a possible or definite head injury. This may be significantly more than the prevalence of autism or head injury in the general population, but so what? The really important question is whether autistics or those who sustained head trauma are more likely to become serial killers. One thing I learned from Ton Dekrsen, author of Lucia de B., a book on the Dutch nurse falsely accused of serial murder on her patients, is that a statistical link that runs in one direction, doesn’t necessarily run in the other as well. Since serial or mass murders are rare, this is especially important.

Also please note that Allely et al. state that, of none of the six murderers (out of 239 total!) with “definite” autism, diagnostic data was available. “Probable” ASD also included a psychiatrist or psychologist having said the murderer had ASD. This raises suspicion, as psychologists and psychiatrists are not immune to media hyping wanting to label every murderer with the mental illness du jour. Dutch readers might remember psychiatrist Menno Oosterhoff accusing Volkert van der Graaf, who murdered politician Pim Fortuyn, of having Asperger’s in 2003. With no diagnostic data on any of the murderers with suspected or “definite” ASD, it is really speculative to even say that there is a one-directional link between mass murder and ASD. And don’t get me talking on the “possible” ASD people, who were simply described as “odd” or “loners” by their family members.

Allely et al. do say in their discussion that speculation about a link between autism and mass murder may lead to negative steretoypes. This of course is not a reason not to document it. If autistics are in fact more likely to be serial or mass murderers, there’s no reason not to write that into a research paper. The thing is, due to the rarity of serial and mass murders, this is unlikely to ever become truly apparent. And even if a definite link could be found, so what? I recently read in another book that, while there is a link between schizophrenia and violence, locking away all schizophrenics in England and Wales for the rest of their lives would save the lives of four potential murder victims each year.

Reference

Allely CS, Minnis H, Thompson L, Wilson P, and Gillberg C (2014), Neurodevelopmental and Psychosocial Risk Factors in Serial Killers and Mass Murderers. Aggression and Violent Behavior, 19(3)288-301. DOI: 10.1016/j.avb.2014.04.004.

Benzodiazepine Use: Benefits and Risks

A few days ago, I was sent an E-mail requesting I post an infographic on my blog about the dangers of benzodiazepines. The infographic was created by a dual diagnosis recovery center for people with a mental illness and co-occurring addiction. Because it is very much focused on the U.S. situation, I cannot repost the infographic here without further comment. I don’t do that anyway. Instead, I’m also sharing my knowledge of and experience with benzodiazepines, their benefits and risks.

The Hidden Dangers of Benzos
All rights reserved. Attribution: first posted on DualDiagnosis.Org

Benzodiazepines are a class of tranquilizing medications, among which are diazepam (Valium) and lorazepam (Ativan). While they can legally be prescribed for a range of conditions – insomnia, anxiety, panic attacks, seizures, etc. -, the Dutch insurance system limits coverage for benzodiazepines to four conditions:


  • Maintenance treatment of epilepsy or as-needed treatment of an epileptic seizure.

  • Treatment of anxiety disorders, when treatment with at least two antidepressants has failed.

  • Treatment of multiple psychiatric conditions that require use of high doses of benzodiazepines.

  • Palliative sedation during end-of-life care.


Physicians who prescribe benzodiazepines for these conditions, need to add the code B2 to the prescription.

I have used benzodiazepines on several occasions. First, in 2006, I was prescribed a benzodiazepine sleeping pill. It was at the time still covered, but no longer would under the current insurance regulations. However, from 2007 on, I’ve used several benzodiazepines for PRN use for irritability. Whether this falls under the multiple psychiatric conditions rule, I do not know, since I am in an institution so medications are covered anyway.

In 2010, I was on Ativan daily for three months. I was on a moderate dose of 3mg/day. After these three months, I told my psychiatrist I felt I no longer needed the Ativan. He changed the prescription to as-needed and I quit taking the benzodiazepine cold turkey. That truly wasn’t a wise choice. A few days from quitting, I was trembling and shaking. At first, I thought it was the antidepressant I’d started taking three weeks prior, but I eventually realized I was probably experiencing Ativan withdrawal. I spoke to my psychiatrist, who put me on a taper schedule that took several months. Ultimately, I spent almost as long trying to taper the Ativan as I’d been on it.

I honestly never found relief from benzodiazepines. Usually, I slept for a few hours then was irritable again. Then again, it seems that with irritability, the goal is to knock you out, not to really make you feel better. I also learned recently that benzodiazepines should really not be prescribed to people with borderline personality disorder, as the anti-anxiety effect causes borderline patients to be disinhibited and potentially become aggressive. I don’t think I ever experienced this myself.

I tend to develop tolerance to benzodiazepines really quickly. With the sleeping pill I took in 2006, I was given ten tablets that I used up over a six-week period. No daily use at all. Still, the last few pills didn’t really work at all. Please realize that, if you got used to one benzodiazepine, you’ll likely develop tolerance to the next pretty soon too. In November and December of 2007, I was on three different benzodiazepines, with about ten benzo-free days in early December. The first, I got used to within five days but kept taking for a month anyway. Then I had the ten days when I was off benzos – but on a stronger tranquilizer that is really an antipsychotic. Then I started taking nitrazepam (Mogadon), one of the more expensive benzos out there. It worked for about two weeks, but I did use the neuroleptic as adjuvant treatment. By the time I’d gotten used to the Mogadon, my doctor thought it would be time for something other than a benzo, but the psychiatrist disagreed and put me on diazepam. That didn’t work and I quit all tranquilizers at the end of December.

I have not been on any benzodiazepines for about a year now. I took Ativan as-needed until the summer of 2013, but it hardly worked so I now take promethazine (Phenergan), a low-potency neuroleptic. I do not want to be on benzos anytime soon again. Then again, I don’t suffer from epilepsy or a significant anxiety disorder and my irritability is kept relatively under control by a daily antipsychotic and PRN Phenergan.

When I ran the above infographic by some fellow bloggers to determine whether it was genuine, some people told me they did great on benzos. If you’ve suffered from severe anxiety for a time and antidepressants have not worked, I can totally see why you’d try benzodiazepines. If you have epilepsy, something has got to drag you out of a seizure. Therefore, even though I have personally not had luck with benzos, I don’t want to say that benzodiazepines are necessarily bad. I like the Dutch insurance policy, making sure that people won’t reach for benzos too soon but those who need them, can get them.

Grief

A few days ago, I read a post on grief as it applies to parents of special needs children. I am a disabled person myself, not a parent, but I can relate to a lot of what is written in this post.

Having been born with most of my disabilities, I didn’t have to face the sudden loss of a normal life, as people with acquired disabilities do. I did have to face the loss of the remaining sight I had growing up, and this has been tough, but I’ve never been fully sighted. I’ve also never been non-autistic, but in this light, I can relate to the issues faced by parents getting a new diagnosis for their child, since I wasn’t diagnosed till adulthood.

Grief never really ends. You can not feel it for a while, but something can always bring you back to the grieving place. For example, I thought I’d accepted my blindness after I had lost my last bit of vision when I was seventeen. I grieved this loss for a while, but then I picked up the pieces again and thought I was fine. But I wasn’t. When, in 2013, I had surgery that could’ve restored my vision but didn’t, I was brought back to the grieving place all over again. I knew this could happen, as I knew the results of surgery were uncertain, but still, it was tough.

Sometimes they’re the bigger life events that take you back to the grieving place. Sometimes, it’s an anniversary or special event. For example, I’m taken back to the grieving place now that it’s high school graduation time. I did graduate high school, but never succeeded beyond that and never had a good high school experience anyway. I also grieve when my relatives are talking about their college endeavors, because I realize I’ll likely never even get close to finishing college.

Sometimes, they’re the tiny nuisances of life that make me grieve. The Internet is becoming more and more visually-oriented, and this makes it tougher for me to get by. When I see a great crafting idea but can’t seem to reproduce it because I can’t see the pictures, I grieve. When I join a blogging community and 99% of the members are Moms, I grieve. And as for real life, when the weather is beautiful outside but I can’t go for a walk because the staff don’t have time to accompany me, I grieve.

Some of my grief involves current inabilities, like the inability to go for a walk whenever I want to or the inability to see pictures. Some grief involves the loss of dreams, like the dreams of a college degree or a child. Some grief involves the loss of freedom and independence. Grief, in short, comes in many forms and shapes. How to deal with it? I wish I knew.

Growing Up with Undiagnosed Asperger’s Syndrome

The Spectrum Bloggers Network is a network of bloggers with learning disabilities, autism spectrum disorders, etc. The founder uses the abbreviation SpLD, which stands for specific learning difficulty, though I would use neurodevelopmental disisability. I’ve been a member of this blog network for about a month, and this is my first time participating in topic Tuesday, which was posted a bit late on Wednesday. The topic is “children”. What this means is a bit vague, andd it can be interpreted in several ways.


  • What does it mean to be a child with a neurodevelopmental disability?

  • What advice would you give to parents of children with a neurodevelopmental disability?

  • Having or wanting children as a person with a neurodevelopmental disability.


I could write on all of these topics, but am going to focus on the first.

I grew up in the 1990s. This means that, while autism, including Asperger’s, was known to the psychiatric community, the general public wasn’t nearly as aware of it as it is now. My parents knew some about autism, as they later told my diagnostician that they’d suspected it in me from an early age on. Then again, the idea that autism affected those with an intellectual disability only, was still pretty prevalent especially when I was a young child in the late 1980s and early 1990s. Asperger’s wasn’t added to the DSM as a specific condition till 1994, after all.

My parents recognized my intelligence very early on too, and they wanted to challenge me as much as possible. I cherish early memories of learning difficult math concepts like squareroots and calendar calculation. Unlike what is thought about intellectually disabled calendar calculation savants, I understood the underlying concetps. Nonetheless, calendar calculation was definitely a perseveration of mine.

I was largely unaware of my social and behavioral difficulties. I did realize I spent many hours in my room as a punishment, but didn’t know why. I also knew that I had few friends. That is, when I still went to the school for the partially sighted for first, second and third grade, I had some friends, mostly older girls. They mostly admired my advanced academic abilities and other than that liked to baby me. In regular Kindergarten, I had one friend. Other children didn’t really bully me yet, but they obviously didn’t accept me.

My parents claim that the real problems didn’t start until I was around nine. When I moved to a new school for the blind in 1995 and moved to a new city the next year, I started noticing that I had few to no friends. Looking back, I realize that I approached potential friends in a hugely childish way. One of my classmates used to ask her frieend for candy, saying: “Got something to chew on?” in a certain tone of voice. I don’t think I realized these girls were friends for other reasons than candy, and I often imitated the one girl asking the other for candy myself. In fourth grade, I had only one friend, a third-grader who remained my friend till I left elementary school, but I wasn’t really excluded or bullied. In fifth and sixth grade, I was. In the neighborhood, my only “friends” were my sister’s friends’ big sisters.

I don’t know at what age my temper outbursts became abnormal. Like, I know that, at five, I had a temper outburst over my father saying only kids under six could access a treehouse, worrying what would happen to me accessing the treehouse next year. This worry seems a bit silly to me for a five-year-old, but having a temper outburst is normal at that age, right? When I was still having these temper outbursts at ten, this became a significant problem. The fact that I still have them now that I’m nearly 28, well, you get the idea.

I was nine when my paretns were pressured by the school into sending me to play therapy. I don’t remember that play therapy was all that useful. I threw out purple miniature dolls because people aren’t purple, tried to get the water tray to overflow just to see if I could, and fought using toy swords with the therapist. After four sessions, summer vacation arrived and my parents took me out. I hated having to miss out on biology class anyway.

I didn’t have an extreme need for predictability. I was somewhat resistant to change, particcularly if plans that I’d been made aware of, were changed. This however looks like a bit of a “my way or the highway” attitude, and maybe it was. I do admit that I was particularly self-centered. I still am somewhat, having to really consciously think about taking another person’s perspective into account. This, rather than rigid routines, seems to be more why I am and was resistant to change. Please note that self-centeredness is in fact common in autistics, and it is not the same as selfishness.

I was eight when Asperger’s was added to the DSM. Then again, none of my school psychologists suggested I had it. My parents did take me to many different psychologists for second and third opinions, but this was mostly to validate that I was indeed intelligent, which the school for the blind often questioned or outright denied. The focus as far as social/emotional issues were concerned, lay on my temper outbursts. It is in this sense kind of interesting that these same outbursts weren’t looked upon as anything other than low tolerance for distress in the 1990s, but were seen as the reason for an autism assessment by 2007.

Ten Patches This Autistic Person Could Use

The Golden Spoons

This is my first time participating in the Tuesday Ten. I’ve been wanting to for a while, but usually I found other things to blog about on Tuesday. Either that, or I simply forgot. The theme for this week is “I need a patch for that”, because this is the weird holdiay celebration tomorrow. Lisa of The Golden Spoons, one of the hosts, wrote ten patches every mother needs. I got thinking about that. I’m not a Mom, so I can’t really expand on those. Then I got thinking: what would I like patches for? And here’s a list of pathes this autistic person would need. Some of them can be seen as “cures” for certain symptoms of autism, while others are work-around patches and still others are patches for the social stigma and misunderstanding I encoutner.


  1. An anti-overload patch. Even though traditional autistic advocates say they would never take medication to hear or feel less, I certainly would. The thing about a patch, however, is that I can put it on and take it off again, unlike the daily medication I currently take for overload-caused irritability.

  2. An energy patch. Stole this one from Lisa, but I too think I could benefit from it. Living as an autistic can be quite exhausting, after all.

  3. A tolerance patch. To put on others when they have a strikingly intolerant attitude. Mostly staff, that is, so I don’t know how I’d get them to put it on, given that their attitude would prevent them from seeing they need it.

  4. A translation patch. I usually misunderstand people and, rather than putting on a “communicate like a neurotypical” patch, I’d like a translator that sits between me and the neurotypical.

  5. An easy text-to-speech patch. While we’re communicating anyway, I’d like to be able to write rather than speak. While text-to-speech apps are already available, I’d like one that I can easily use and that doesn’t make me look like a weirdo. I’d also like it to translate from speech to text (or braille, in my case). I’ve honestly been thinking of wanting a Communicator, which is a device used by deafblind people, but they’re very expensive and I’m not eligible for funds. i’m verbal, after all.

  6. A patience patch. Again, this one is stolen from Lisa, and I’d like to put it on others again, though I could myself use some patience at times.

  7. A perseveration patch. The good thing about patches again is the ability to put them on and take them off. Today, I’ve been looking everywhere for some perseveration, while at other times, I’m totally immersed in my special interest.

  8. An antidepressant patch. I don’t suffer from clinical depression, but I do have days when I’m very depressed. Again, like the anti-overload patch, this would seem like a better alternative to my current daily antidepressant.

  9. A patchwork weighted blanket: Lisa said patches can be any sort, so patchwork quilts are included. I’ve always wanted a weighted blanket, but never took the effort to find myself one.

  10. An executive functioning patch: something like an anti-procrastination patch, but it’ll also break down difficult tasks into smaller, easy-to-follow steps.

Note that every autistic person is different. This is why I referred to “this autistic person” in my post title rather than “every autistic person”. If you’ve met one autistic person, you’ve met one autistic person, after all. If you’d like to contribute what patches you could use in life, write a list of ten and hop over to Lisa’s blog to submit it.

Graduation

In the U.S., May is the month of graduation. In the Netherlnds, high school students are currently in the midst of their final exams, which will determine whether they will graduate or not. I still have nightmares about final exams, even though I graduated grammar school with above-average grades in 2005.

As Ginny Marie points out in her spin cycle prompt for this week, graduations can mean many things. People can graduate from preschool, elementary school, high school or college, but they can also graduate from certain life events or habits. For me, high school graduation marked my graduation from pretending to be normal. Two weeks before the graduation ceremony, with me already having had my final exams, I E-mailed the student counselor to let her know I wasn’t going to Radboud University to study English after all, but was instead going to my country’s blindness rehabilitation center.

The high school graduation ceremony was okay. The principal had planned a lot of pooha about how great my school had been to accept a blind student – I was the first and so far only blind student at this school – and how wonderfully they’d helped me graduate. When I heard of these plans, I was pissed. I argued that I didn’t want to be singled out. This was one reason for my objection. Another was the fact that grammar school had been a bad experience right from the start. In September of 1999, I wrote in my diary that I knew I’d rather graduate a grammar school in six years than a low-level special education high school in four. I don’t know how much of that was truly wanting to, and how much was needing to in order to please my parents.

High school graduation marked my graduation from doing what my parents and teachers wanted me to, which was (or seemed to be) pretending my invisible disabilities didn’t exist. Even though it was my high school tutor who had arranged the initial intake interview at blindness rehab, he half assumed these people could push me to go to college better than he could. In reality, they ended up recommending the basic rehab program. My parents were initially not amused, because the program lasted only four months, but they eventually accepted that I needed to work on myself first before going to university.

Even though I graduated from parent and teacher-pleasing, I didn’t graduate from dependence. Till far into my stay at the acute ward in 2008, I did just do what my social worker or doctor wanted me to. Even though this lessened a bit when I got to the resocialization ward in 2009, I’m now at once at the opposite end of the pendulum, defying my staff constantly, and at once I’m still dependent on them. I ultimately end up doing what they want me to, after all.

Now I know that no-one is truly independent. Then again, parent/child relationships, schools and institutions instill more dependence on the child, student or patient than does ordinary adult life. Next year, it’ll have been ten years since my high school graduation. Will I move towards true interdependence then?

He Is Trustworthy

Yesterday, I talked to Shannon from Chosen Families. Shannon is the mother of a disabled child and her site aims to be a ministry to special needs families. Her most recent post is titled He Is Reliable. In this post, Shannon reflects on John 8:26, which in the Bible version she uses reads in part “he is reliable”. In the NIV, it reads “he is trustworthy”, which speaks to me in a similar way.

He is trustworthy. Why do I struggle with this idea? Shannon names just a few circumstances which special needs families can be faced with, and I have faced many of them myself. Yet He is trustworthy. I have a hard time trusting God, because, after all, why did He put me through what I’ve been throguh if He is trustworthy?

“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.” (Proverbs 3:5-6 NIV)

This. I searched for “trust” on Bible Gateway and this was the first suggested result. “Lean not on your own understanding.” This. Why would I be able to judge God’s reliability if I do not understand His ways? Skeptics could say that God exists to serve man, but according to the Bible, this isn’t so. Would He, therefore, serve me by putting me through what I’ve been through? Maybe, indirectly, but maybe not. Maybe my experiences serve some entirely different purpose, which I may not be able t understand.

It is tempting to think that as humans, we can control our own life experiences. If we do good, Karma or some Christian variation of it will give us happiness. This isn’t so. Of course, we have free will too and therefore have some level of control over our lives, but ultimately, part of what we will endure is in God’s hands. “In all your ways submit to him, and he will make your paths straight.” He is trustworthy, after all.

Mental Health Awareness: Living with Significant Mental Illness

Today, I’m linking up with Vicky’s mental health linky for Mental Health Awareness Week in the UK. As regular readers will know, I’ve been diagnosed with a mental illness for years. My original diagnosis was adjustment disorder, because I had landed in a psychiatric crisis when living indpendently and just didn’t meet the criteria for depression. My parents joke that I just didn’t wake up at the right time, because my doctor told me when I had sleep disturbances, that they weren’t typical of depression. I’m pretty sure I wasn’t clinically depressed.

Then came impulse control disorder NOS, which was basically an extension of the adjustment disorder I suppose, except that it reflected just my behaviors and not my moods.

In 2010, I was diagnosed wit dissociative identity disorder and PTSD. I want to tell anyone with a diagnosis of PTSD that it’s not a life sentence. I had a mild case as far as the regular symptoms were concerned (I also had symptoms of complex PTSD, and still do). EMDR treatment was suggested a few times, which can be very effective. However, because I had such a mild version of PTSD, the symptoms lessened to the point where I no longer needed the diagnosis with a lot of talking about my traumatic experiences. I later found out that talking and talking on about your trauma under a therapist’s guidance until it doesn’t hurt as much anymore may in fact be effective in people not responding ot EMDR. I don’t know the specifics of this therpay, which is called imaginary exposure, and I didn’t get any formal form of treatment for the PTSD myself.

As for the DID, I have or had a mild version of that too, probably more dissociative disorder NOS, and was able to hide the symptooms when people weren’t accepting of them anymore. There are many people, mostly peers, who believe my diagnosis of DID was incorrect. As for my therapist, she changed it to borderline personality disorder and feels this includes mild versions of DID too, so that I don’t need an additional diagnosis.

What is it like living with a mental illness? Well, for me, it is one confusing experience. I am very suggestible and have a poor sense of self. This means that I absorb many emotions from other people, and yet I do not know how to handle these emotions. I can have rapidly shifting, dramatic mood swings. One momnet, I’m fine; the next, i’m raging. Then again, my definition of “fine” is probably not the same as a currenlty mentally healthy person’s, because I’m always somewhat anxious and/or depressed.

Borderline personality disorder often co-occurs with other disorders. I have no additional diagnoses (other than autism, which I don’t consider a psychiatric disorder), but I could likely have been diagnosed with a range of disorders if this would make a difference. As I said, I have dissociative symptoms. I also have suffered from chronic, low-grade depressive moods since my teens, and likely had what is now called disruptive mood dysregulation disorder as a child. I also have some level of anxiety and used to have quite bad obsessive-compulsive symptoms in my teens and early twenties. They however went away witout treatment when I was hospitalized, so were likely a response to stress. Same with many of my somatic symptoms.

There is treatment for most of my mental health symptoms. In fact, I have improved a great deal over the years. That doesn’t mean my mental illness can be cured. I strive for recovery, which means living a meaningful life in spite of my mental illness.

Living a meaningful life, for clarity’s sake, does not necessarily mean not needing mental health support. It is a common misconception, which I fight even with my therapist, that needing less support is the ultimate measure of quality of life. I, for one, am likely to need support for the rest of my life. This doesn’t mean I can’t find joy or even happiness. I find joy in my hobbies, which include blogging, crafting and reading. I find happiness through my relationship with my husband. I do still have significant mental health problems, and I won’t say they don’t limit me. Then again, I’m more limited by the idea that needing less support is more important than feeling better.

The Five Stages of Grief in the Recovery Process from Binge Eating

When browsing blogs on mental health on Mumsnet, I came across a blog on recoveyr form alcoholism. While there, I found a post on the five stages of grief in substance abuse. You are probably familiar with Elisabeth Küber-Ross’ five stages of grief in bereavement. These same stages apply to some extent to those recovering from an addiction:


  • Denial: people feel that they do not have a problem concerning alcohol or substances. Even if they do feel as if they might have a small problem, they believe that they have complete control over the situation and can stop drinking or doing drugs whenever they want.

  • Anger at the fact that the addict has an addiction or at the fact that they can no longer use alcohol or drugs.

  • Bargaining: the stage where people are trying to convince themselves or others that they will stop substance abuse in order to get out of trouble or to gain something.

  • Depression: sadness and hopelessness, which usually happen during the withdrawal process from alcohol or drugs.

  • Acceptance, not merely as in admitting you have a problem with alcohol or drugs. Acceptance involves actively resolving the addictioon.

I do not have an alcohol or drug problem, but I do exhibit disordered eating. I wonder to what extent these stages of grief apply to the recovery process from eating disorders, in my case mostly binge eating. Denial is certainly common in individuals with all types of disordered eating. I for one was in the stage of denial up until quite recently. This is not merely not being aware of the problem, like I was in early adolescence. Rather, from my teens on, I did realize to some extent that my eating habits weren’t normal. I remember one day buying five candy bars at once and eating them all in one go. When my classmates pointed out that this was outrageous, I shifted from lack of awareness of my eating disorder into denial.

As I said, I stayed in denial for years. I continued buying sausage rolls for lunch every single day until the end of high school, then at blindness rehab ate candy and chips everyday. I gained rougly ten pounds in those four months at blindness rehab, thereby reaching the upper limit of a healthy BMI.

It took several more years before I moved into the stage of anger. By 2008, I was convinced I would die young, and my unhealthy eating habits were one reason for this. I hated myself and my body, yet didn’t stop eating unhealthy amounts of candy. If anything changed at all, I binged more.

I don’t know how I maintained a relatively healthy weight until 2012, but I did. I did start purging in 2011, which can be seen as either a response to anger or a form of bargaining. After all, bargaining can also be seen as trying to reduce the (effects of the) addiction while not completely trying to abandon it.

I reached overweight status in 2012, then obese a few months ago. I started going to a dietician in 2012, then quit going again, went back in the fall of 2013, quit again, and recently started going again. I am still at the stage of bargaining regarding my disordered eating. When told I just need to stop buying candy, I object. Instead, I want to lessen my candy consumption, keep it under control. Yet isn’t the whole point of an addiction not the substance, but the lack of control? I know that one difference between food and alcohol or drugs is that you can’t completely abandon food, and my dietician said that getting fruit or veggies within easy reach as a substitute for candy, is unlikely to work. After all, I’m going to keep the idea that food is an easy way out of emotional stress.