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Recovery storyOpen in a New Window

To every one blessed with someone close - cursed by anorexia



Intention

This is a record of how our oldest son made it through anorexia. It has been 4 years of absolute hell and agony - but he and the rest of the family have made it out alive. It is my hope that his story as observed and recorded by me - his father - can be of comfort and help to all of you struggling with the disease - be it as a parent, sibling, spouse, friend or just someone close.



These lines are written one year and a half after he was discharged from the hospital clinic specialising in eating disorders. From official recovery until now he has finished a bachelor education in the social sciences, won a european essay contest and commenced on a Master’s programme.



Background, family and early childhood

Our oldest son developed a severe case of anorexia visible to us about 4 years ago. He was and thankfully still is a member of a reasonably happy, well functioning family- consisting of his mother, father, little brother and a dog. No divorces or excess strains through childhood. We are from Scandinavia. Both parents hold university degrees and well paid jobs. He and his brother went to the same school in one of the “good neighbourhoods” in the city - 10 minutes walking distance from home. He and the the rest of the family have traveled the world on vacation - from the day he was borne. Lots of good close friends from nursery, school and college have supported- and kept close to him the whole time during his illness.



When you hear hoofbeats it sometimes are zebras

On a summer holiday in the south of Portugal just before his first year of high school (age 16) he asked his mother and me whether it would be okay if he became a vegetarian. He and a very good friend (The friend was at the time of this decision on a one year school trip to the US). I remember that when he asked; everything in me felt wrong - unfortunately I thought it was a part of his growing up - exploring other ways of living, and in a sense a mild rejection of me. But who cares its part of growing up… creating your own identity and so on. Little did I know - what was about to come.



Alienation and strife

The next couple of years were one long slope of deteriorating relationships among the family members. Basically everybody was fighting everybody - what once was nice (companionship and enjoying each others company) was replaced by a constant bickering and nagging. In hindsight it was the manipulatory side of anorexia - as long as everyone else is occupied with something else it is invisible to everyone except for the one with the disease. Basically what is happening is that the family disintegrates and in that process the anorexia can grow strong because no one is looking for it.



During the Summer holidays in 2012 (two years later) it becomes apparent that he had anorexia - terribly skinny - ill tempered - and worst of all whatever he consumed he threw up again. When we came home we consulted/visited his doctor every week - long discussions and arguments -little did it help. Due to the legislation in our country at the time - it was not possible to submit an adult to hospital without his/hers consent. From there on it was a waiting game - when would he become weak enough to be hospitalized? On his 20th birthday he made a huge lunch for the family and our closest friends. At the table I saw peace and tranquillity in his eyes - he was happy - in a way you would expect someone to be happy when they have made their peace with God and are ready to leave this life.



His illness was now so severe that my doctor, my wife and I coerced him into hospital. The reason for hospitalisation: suspicion of pneumonia. Once in - the wheels were set in motion. On his Second day a professor in eating disorders officially diagnosed him with anorexia and submitted him to a closed psychiatric unit. Here the staff was genuinely worried that he could die (refeeding syndrome) if they started feeding him right away. Hence two weeks of strict diet - and tons of tests. Luckily no lasting damage to any organs or bones. He spent two months here - the staff was phenomenal - specialized in psychiatry and as one of the nurses said “we are not used to eating disorders here” - they stabilized him and put on af few kilos of much needed body weight. Thanks to their skills force feeding was never on the table - he ate and kept what he ate - without the torments that many other people with anoxia suffer from.



Come Christmas he was allowed to come home for the holidays. They went relatively peaceful and two weeks into January he was discharged from the closed psychiatric ward - and transferred to open treatment and therapy at the most renowned eating disorder clinic in the country - and he came home to live with the rest of the family. The person who came home was almost two different personalities. It was a daily battle just to get along. Eating was problematic - and he kept on nagging us about leaving home - he wanted to live on his own.

During the year his psyche gradually stabilized - and come February the following year he mowed into his own apartment. In a better state than the year before but still frightfully skinny and lots of bursts of anger and frustration.



Coming back - and Collateral damage

Over the next two years he gradually found himself mentally - so to speak. He restarted his bachelor study, and ever so slowly the anorexia subsided - but still no significant weight gain- until winter/spring 2016. Within a period of 5 months he regains his body mass. He is discharged from the clinic - and life is almost as if has never happened.



Our Marriage has during the whole time been stressed to the limit. Next year we have been married for 25 years - however this has not been a given for the last couple of years. We have as individuals and as a couple been tormented by the fact that it happened on our watch. The sorrow, guilt, anger and self blame has not been easy to stomach. In short every happy moment we have experienced together has been questioned - because how could such a terrible outcome emerge from a loving relationship and family? The good news is that we have turned the corner - we again glimpse the best parts of the other family members.



His younger brother managed to finish his exams the year our oldest boy was diagnosed. After that the young man floundered for a couple of years - started and dropped out of one university education - started on another one, which he is currently on a sabbatical from - working and contemplating what he wants to do with his life.



My stab at what anorexia was to our oldest son

Having spent a ton of time reading, thinking and talking about what anorexia is - it is my firm belief that the variety of anorexia our son caught - is founded in fear and anxiety. For him anorexia has functioned as an aid - a tool which has kept his fear of life and personal failure in check - until he almost died controlling his fears.



My personal “breakthrough” came - when I read a UK study where people with anorexia self reported on what the disease meant to them - In short it was a control mechanism with which they managed and controlled their fears and anxieties.



My reaction to this was both relief and horror. Relief because a lot of our son’s anorectic behavior suddenly made sense - and it was possible to come up with a plan of how to communicate with him - I.e. never attack the eating disorder directly - it was what held him together at the time. Horror because it gave me an idea of what monsters and horrors (imagined to the rest of us but very real to him) he was dealing with.



What we tried to do was (this is not an exhausting to do list - rather it is the headlines under which we tried to address his fear of life and his way of managing that fear):



Quietly addressing that failure is a natural part of life- it happens to everyone - and at its best it is a source of laughter and always learning.



Living with the fact that the future is unknown - when possible we had talks about what is knowable about the future - and how chance and coincidence has a much larger role in life - than what is generally realised.



Curiosity - yep it killed the cat - but it is also the source of imagination and adventure - focusing on curiosity - takes the focus away from fear.



Talk to the dare devil - in a sense our son was very courageous - he went out into the world every day - despite his fears - getting him to realise that he was a tower of strength in his own right - might easen the anorectic pressure.



Thank you - there is hope

We have been extremely lucky - At every pivotal point in our oldest son´s disease he has met the right people for him - be it nurses, doctors, professors or psychologists. His family and friends have had the love and patience it takes to hold on to someone who suffers from anorexia - throughout his illness.



It is not my place to give advice. However what held me together was faith - that our son and the rest of us would eventually pull through - even though the odds were not good. Daring to to what was in hindsight right (letting him leave home to live on his own- when he was far from okay) - at the time - it just felt right.



If someone close to you develops anorexia - have patience and faith - know that he or she will fight hard to drive you away. Roll with the punches - stay in the ring - commit yourself as much as you can - knowing that at times you will fail. But never ever give up - on your loved one or on yourself.

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'Around the Dinner Table' Online Forum for Parents and Carers

 

diagnosis questionsOpen in a New Window

Hi All,

Is it common for AN suffers and even some doctors to deny the presence of anorexia?

My d has been diagnosed and is not fighting treatment (FBT) but still believes that she is quite normal. (same as her peers)

Also,  we have some health professionals that all agree with the diagnosis, but one lone doctor (a high level specialist in treatment of adolescents) that needs additional evidence before she will support the diagnosis.


thanks



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'Around the Dinner Table' Online Forum for Parents and Carers

 

Desperate and making things worseOpen in a New Window

My 16 yr old daughter has been diagnosed over a year now and we are stuck and making no progress. She has her exams in the next few days/weeks and I am making things a whole lot worse as I am so desperate and am getting so many false promises of eating snack later etc. I haven't slept properly in weeks and don't know what to do. I feel sick with fear every meal time. Just mentioning food changes everything. We used to be so close but now I feel like she resents me - everything I suggest she does the opposite, she resents losing control but controls me by saying I have to be there, or if I'm not, she ends up eating less as she knows her dad won't watch so closely. I get so frustrated and upset - tonight I threw a bunch of bananas across the room, so everyone cried and screamed and nothing was eaten. We are not 'technically ill enough' for impatient care and the support we are given tends to be little more than being weighed and told to keep going. What can I do. I love her so much but feel so helpless. She won't allow the magic plstr scenario to happen as doing this means loss of control and eating nothing. I end up lecturing her, which I know is wrong too. I am making so many mistakes and everything much worse. Do I move out?

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'Around the Dinner Table' Online Forum for Parents and Carers

 

4 years post diagnosis - updateOpen in a New Window

hello all!

it's been four years since diagnosis, and about two years since I last posted.  I can now safely say I've officially kicked ED's ass, just like I told my dd I would the very first day I started refeeding.  it's still lurking beneath the surface, but it's scared of me    and my dd can put it in its place on her own 99 percent of the time.

I remember when my dd was terrified of gaining weight.  now she doesn't want to lose any weight.  when she doesn't feel like eating, I no longer worry about it.  if she gets full after eating half her food, I don't blink an eye.  it's not ED.  IT'S NOT ED!  wow!  I now consider it normal for her when she doesn't want to eat or finish her food.  she has full control over her eating and she does great.  she doesn't care about calories, and when someone says such-and-such food is bad for you, she just internally rolls her eyes.

her struggles now revolve around anxiety and depression.  she's gone through a merry-go-round of traditional school settings and home schooling over the past four years, and is currently home schooling.  I don't fight it.  it is what it is.  she is constantly evolving, and I just ride the waves with her.  the fact that she keeps trying traditional school just means she has not given up.

she just turned 16 (diagnosed at 12) and couldn't wait to apply for a job.  she really wants to work over the summer.  here's a girl who struggles to leave the house and has anxiety attacks when she is in a store for too long, but she WANTS to get a job.  I truly believe it is because her brain is maturing and she is ready to fight the fight.  most days she is too depressed to fight, but at least the tides are turning and the light is coming on for her.  she is making attempts to be involved in her own recovery from mental illness.  she has a looooong way to go, and will always be fighting, but she is on an upward trajectory and that's all I could ever want for her.

I've said it before and i'll say it again: she would not be where she is today without the compassion and knowledge I got from this site.  any time, day or night, I could come on line and there was a cheerleader here for me, getting me through those times of intense struggle, calming my fears, and erasing my doubts.  thank you thank you thank you!!!!!!!

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Hopeless HostageOpen in a New Window

Back in the hospital because my d continues to restrict and refuse her PHP plan. We were all lined up for the Ohio program with Dr Hill but her vitals just weren't stable enough. We have an opening at a closer PHP but I know it's going to be more residential time first, which I think has done more damage than help, she has picked up so many bad habits and has been traumatized, yelled at, embarrassed at both residential places. She's is so quiet and compliant that when she isn't progressing they all start blaming her and punishing her or us. Doesn't she punish herself enough? I'm really hoping that we could get her stable at the local inpatient hospital which has an eating disorder unit, but were waiting for a bed and at the children's hospital where we've been before.

im happy our new doctor raised her goal weight but now we're in the extreme other direction, and I'm calculating the weeks to get there and the pain and I might had well just flush another year down the toilet, my poor son lost his sister to this monster when he was 10 1/2, the just reconnected this last week and who knows what's next. My wife, God bless her is such an advocate for my D but can't do anything else, and the doctors and providers all fight her and blame her when she calls them on their mistakes. I have to back off and detach from both of them because it is making me sick and destroying my sons life and my other college daughter. I am so sick of people telling me what I have to do including my daughter. Thanks for letting me vent. Btw goal weight was 115 at last resi and new doctor says 140, she was 123 at prior resi which I thought was manageable. She's 100 now 5 feet 6 inches. I feel like this will just get her committed for life.

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Another gem from my daughters business FB pageOpen in a New Window

Dear ATDT,

Another post from my recovered daughter


When I post a photo of myself like this these days I actually have to stop & pinch myself! Is this really me, have I really come to this headspace?! In my younger years I struggled with an ED. There were times when I thought self confidence and happiness would allude me forever.

I didn't get here by chance, I got here through hard work, tears and determination. I just knew there had to be more richness to life than just food, exercise and my self image.

I have been at the bottom, the very, very bottom filled with self hate and obsession so I know how dark and empty it can feel but I want YOU to know that there is so much more to life. There is so much richness, so much experience and so much happiness to be had away from the focus of our physique. I also want YOU to know that you can get here to, it won't be easy, it will be the hardest thing you do but you can work through your issues and come out the other side. There is happiness inside you, there is contentment inside you, you just have to be willing to work hard to find it

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Refeeding to promote good gut health?? Anyone tried it?Open in a New Window

After attending the At Home with Eating Disorders conference and listening to Dr Leanne Barron's talk on nutrition I wondered if anyone else is interested in the relationship between gut health and mental health? More research is emerging about the effect diet has on people suffering with depression and anxiety and that restoring a good balance of microflora in the gut can greatly improve the mental health of these people. If this is the case, knowing that there are many correlations with the mental health of AN sufferers and other mental health disorders,  should we possibly be trying to re-feed our kids keeping this in mind? This of course is tricky with ED sufferers I know, as anything that could look like food restriction at all will perpetuate their negative thought patterns about "bad" foods. However, if we are feeding our kids food that is not great for their gut flora (ie it is going to make the bad bacteria thrive) might we be contributing to or prolonging their recovery?

Looking for a multipronged approach to slaying this disease and am interested to hear about anyone's experiences trying a gut friendly refeeding process. Time to be thinking outside of the square with this one maybe?

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

At what BMI is AN considered recovered?Open in a New Window

What is your experience? 
My d's ED doc targets 110 lbs and at another assessment in London, ON, the team said 118-120 lbs. She is at BMI 19 now.
The therapist suggest we don't look at the number but overall well being (incl. mental) which I agree but just to get an idea. Thanks! 

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Mother-in-law finally addressing her EDOpen in a New Window

Hello,

I was hoping to get some information about older patients with ED. My MIL is 65 and has been anorexic and bulimic for nearly her whole life. The past few months her health issues became serious enough to cause hospitalization and surgery. She is just starting an outpatient program. 

I love my MIL but both of my in-laws are very private, old-fashioned people. I just want to know my husband and daughters and I can best support her. 

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Suspected EDOpen in a New Window

My daughter is 15-years old & has recently lost 3-4 lbs. She has always been very small, but maintained a consistent growth trajectory. This weight loss is big for her & her Pediatrician asked us to come back in 1-month for a weight check. About a week later, I called a therapist who met with us the next day. She recommended we begin Phase 1 of Maudsley Method. My daughter is giving us little/no resistance with the increased eating & monitoring. Some age-appropriate yelling & being annoyed. The therapist suggested she either has an eating disorder or a medical condition.



I guess I'm just wondering if showing little resistance during Phase 1 is typical. This is our 4th day.

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'Around the Dinner Table' Online Forum for Parents and Carers

 

Nice to meet you (and early satiety question)Open in a New Window

What a gift to find out about this forum after 18 months of AN struggle! Now I feel I have a 24/7 support, not just once a week.

Let me introduce myself, and our situation. My d is 14 y.o. dx with AN. At age 4 she was dx with Asperger’s. Prior 1st AN signs she had a miserable year bc she couldn’t connect with her peers, she had no friends, felt depressed and suicidal.

Dec 2015 – dieting started and purging. Family doc dismissed us saying it will pass. We had to wait for ED clinic appt till Feb 2016

Feb 2016 – ED assessment, sent to the hospital for 3 weeks at 84 lbs. Came home with 94 lbs.

March 2016 – outpatient FBT Maudsley treatment. ED therapy once a week till present. She regurgitated and vomited after some meals, quite often. Wasn’t swallowing her saliva (all that started in the hospital).  I insisted on the scope but specialists blamed ED. We live in Canada, Ontario, hence long waiting list for health services.

July 2016 – finally scope and gastric motility done. Gastro said one of the slowest digestion she has ever seen. Biopsy showed Eosinophilic Esophagitis (EoE) – inflamed esophagus. The cause is usually food allergy. I was questioning if this could be due to her vomitting but gastro said given very high amount of eosinophils (white cells), it is food allergy. She has never been allergic to anything. Symptoms of EoE very similar to AN, treatment absolutely opposite (low calorie meals, small frequent amounts, lots of food restrictions, preferrably 6 allergen food elimination diet to find the culprit). It was a catch 22. Meds to increase digestion didn’t help at all. Steroid treatment didn’t work. Finally, 5 wks of elemental diet (liquid hypoallergenic drinks only) helped to bring EoE under control in Jan 2017.

Jan 2017 – still at 95 lbs. Started taking steroids in order to eat everything except dairy an soy (per gastro doc), vegetarian per her choice. Still wasn’t gaining weight.

Feb 2017 – caught her vomitting at night. Took another stress leave, and 24/7 monitoring started. Partial school day, lunches at home. Monitoring at school in place. She tends to have suicicadal threats bc she feels lonely, regular psychiatrist appts.

May 2017 – she is at 107 lbs. Still can’t have soy and dairy until next scope (next month). Got her eat fish and we are at 2 bites of chicken (work in progress). She absolutely loves animals bc she still has trouble making friends but given the fact  she loved meat prior AN, there’s no choice for her until she is fully healthy. She is still struggling with early satiety, and hates the feeling of fullness, screams that she has her limits but I push till sometimes she regurgitates. Help! I hover below 3000 cal a day bc of this!

Also, she experiences abdominal pain a lot. More like discomfort which is released by burping but it is an ordeal for her to wait for that burp. I found somewhere on this forum digestive enzymes, so I started that today.

One last thing … what is “WR”? I see it a lot in this forum J




Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

What recovery looks like....so proud of my daughterOpen in a New Window

Yesterday afternoon, my daughter developed a bout of nausea and her stomach was quite upset.  She gamely came to the dinner table and tried to eat, but the smell of food set her off and she vomited.

She rested for 30 minutes, and then asked for crackers.  After the first set went in successfully, she had more and then still more, followed with some of the things from her dinner plate, and then her evening snack.  I was so proud that she gamely did what needed to be done despite her upset stomach.  

Before her recovery, any minor upset would have been reason to "beg" to not have to eat as it would be "impossible."  Now, she knows she must eat, whether she feels like it or not, and she will find the things she can eat (like crackers).  While it wasn't the most balanced of meals, the important thing to me was that she got the food in.

And, I told her how proud I was that she did this without me prompting or asking.  She ASKED for food.  She kept ASKING until she had enough to make up for dinner.  And, another happy moment...she reacted positively to my praise.  In early days, of course, any hint of praise set her off in the wrong direction and made her feel worse. 

It really does get better!

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Australia's Federal minister for Health Honourable Greg Hunt speaks about the Bridge's Connecting The Dots conferenceOpen in a New Window

Dear ATDT,

Here is Australia's Federal minister for Health the Honourable Greg Hunt speakng about Eating Disorders and about the Bridge's Connecting The Dots conference on the Eating Disorders Families Australia Face Book page

https://www.facebook.com/edfaustralia/

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'Around the Dinner Table' Online Forum for Parents and Carers

 

The Involuntary optionOpen in a New Window

Has anyone in Australia used a guardianship order through the Office of the Public Advocate? I was told by Butterfly Foundation support line that this is possible. I know it will take some work to arrange but I will follow advice from anyone out there that had knowledge/ experience with this. My daughter at 22 yr old will not voluntarily seek help. At a BMI of 11 she needs some forced help to close the gap until her BMI is high enough for other treatment and support to take effect. After 7 years the family support is fading and this adult is lacking any support in her chances to regain her life. If other states in Australia can used forced treatment that so can Sth Australia where we live.

Thanks for any input you can offer

DDU

Category:

'Around the Dinner Table' Online Forum for Parents and Carers

 

Effort to end comparing to her twin sister--hell breaking looseOpen in a New Window

I know many of you might have had your ill child compare with someone, so I would like to hear from those of you that tried to stop the comparison.  In my case, T1 compares everything to T2, and tries to out do her by adding just one more bounce to her steps, or leave that one kernel of rice on the plate, smeared so I can't see well.

Yesterday we went biking because we had a burst of summer for a couple of days here in Toronto area, and toward the end, I heard T1 asking her 2 sisters if their legs were hurting.  T2 of course said yes--opening a car door is a pain for her.  T1 checks the resistance level on T2's bike and it was level 6, while hers was level 2. 

In the evening, her anxiety over the biking incident exploded and she begged me to make it right because it was not fair that she didn't get the workout that her twin got.  I told her that no, we rode the same distance, you had to put the same energy to ride your bike, so I will not.  Needless to say she went bonkers and it was one of the worst ones we've experienced as of now.   She woke up and continued the raging, which at some point I found it funny as she had lost her voice last night.  But I felt that it was a good place to start for us to end this comparison demon.

All night I read previous posts about this--but I have some questions for those of you who experienced this:

1. When/why/how did you decide to stop the comparing? 

2. What did you do to stop the comparison?

3. What were the results and how long did it take for the change to take place?   I read that some people explain what happened but I don't often read the timeline--I guess it's all a blur sometimes.  I am concerned that the anxiety level, which will shoot through the roof with the changes, may make her be even less rational and make her do something, such as self-harm.  I did not sleep last night because of that.

We had our assessment to a local ED program last week, and I got a call this morning that it will be about 2 more weeks before they can figure out who will be working with my girls.  I don't want to wait another 2 weeks as T2 is crying on a daily basis because T1 keeps her like a hostage.  Thank you!

Category:

'Around the Dinner Table' Online Forum for Parents and Carers


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