F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

Join these conversations already in progress:
• Road To Recovery - Stories of Hope
• Events for Parents and Caregivers Around the World
• Free F.E.A.S.T Conference Videos

Visit the F.E.A.S.T website for information and support.

If you need help using the forum please reach out to one of the moderators (listed below), or email us at bronwen@feast-ed.org.

Need to talk with another parent? F.E.A.S.T. parents offer peer support via:

LauraCollins_US
 “Most families are so burned out, crushed, guilty, that they don’t want to come forward,” she says. “There are still these myths out there—that these are chosen illnesses and parents somehow failed to prevent, or caused, or exacerbated the problem.”

https://www.sciencemag.org/news/2020/04/rethinking-anorexia-biology-may-be-more-important-culture-new-studies-reveal
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
Quote
Enn
Dear @PleaseEAT,

Anniversaries with Ed can be really tough. They can stir up all those emotions and trauma that we as parents experience and no matter how long ago it was, these can feel fresh and raw. That is the PTSD, compassion fatigue etc rearing its ugly head and biting down on us. 
I know you have been at this for 3 years and she is now exerting her autonomy as an "adult".  You have done a great job. You have gotten her help, you have her with you, you are supporting her. You have nothing but my respect. I know you have read a lot on the forum and just wanted to remind you of Tabitha Farrar and her blogs etc.. Do you think your d would be amenable to  reading about Tabitha?

I understand how exhausted you are and wonder if you have support for yourself. 

I know we mention self care and taking breaks from ED for ourselves a lot and hope the you are able to separate a bit from ED and ensure that there are pleasant moments in your day. 

I know with COVID lockdowns all over the world, isolation and feeling alone with our thoughts, that can make any one anxious. 

What are your plans for this weekend? Can we offer an ear or chat via the Chat or email buttons above? 

Can we help you here, on the forum too? We are here ready to stand with you and cry with you and give you a place to vent. 

We really are in this together ED and COVID and you are not alone. None of us are. Please reach out when and if you need. That goes for anyone reading this as well. 

I have been thinking of everyone here that last few weeks as I process the "New World". I still feel out of sorts and with ED that make magnify the new challenges we are all facing. 
Sending you a big, big hug while maintaining 2 meters or more from you (😃) @PleaseEAT,

💐 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
MKR
Hi @PleaseEAT,

That bit chucked into the bin would have triggered my PTSD for sure.

Try to look at it over the timeline, I bet it is now a random thing. Even when it happens months apart, it feels like a complete return to square 1, like Hold tight, here we go again. And then for the next few weeks it's all good, but we parents are still anxious.

I agree with the suggestion of Tabitha Farrar's podcasts. We played one to my ED daughter, for one particular issue and it resonated with her.

The lockdown is scary, and looking too far into the future can be upsetting. I suggest taking one day at a time. Are you able to do things together with your other daughter, like have a cup of tea over WhatsApp or FaceTime?  Nothing big, just a regular little chat.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
Quote
sandytoes

I don’t want to take away from your responses, PleasEAT, because I hear you and I feel your pain. I share your frustration and overwhelming sense of despair that ED is still around after so many years. It is at my house too. Where is the help? Why can’t the professionals fix my kid (or help ME fix my kid)? Which brings me back to the article...

Is anyone else confused? I love any attention brought to the study of Eating Disorders and I look forward to reading more as it’s published. But this article seemed to repeatedly mention that many anorexics do not want to be thin and another study about many having a naturally low BMI (pre-Kindergarten). I’ve read hundreds and hundreds of posts on here, is that anyone’s experience? It certainly doesn’t describe my AN daughter. 

I think I have a grasp of the new beliefs around the biology of EDs. My understanding is that someone could lose weight from dieting, or a flu bug, and become anorexic, as a result of the starvation. Am I completely off base to think that accidental weight loss from illness leading to AN is far more rare?

I’m very curious about all this because I don’t believe the ‘biology’ of anorexia will have a one-size-fits-all answer. Someone who has always had a low BMI and no desire to be thin, but can’t eat and someone who had a healthy BMI and starved themselves into AN because they want to be thin seem like two very different illnesses to me. Yes, there’s overlap for sure, but how much? 

Thoughts?

Quote
Enn
sandytoes wrote:

I’m very curious about all this because I don’t believe the ‘biology’ of anorexia will have a one-size-fits-all answer. 

Thoughts?


I would agree with you that there really is never one size fits all but not just for AN but for many medical and psychiatric diagnoses. 
My take on the article was this:

AN has a genetic component and with certain drivers, environmental, psychological and physical, POOF AN  may appear. My D, I feel had a relative energy deficit with growth and then that was what triggered AN. Then adding in kids on diets and talking about being "small" aided in her perpetuation of her ED.

The current studies are very helpful to understand the biological components of ED and that in turn can help us treat ED. That may be psychological therapies AND medications.  Also like breast cancer, if it is Estrogen positive or a triple neg cancer, we have different tools in the toolbox that are specific to each type. 
I liken it to type 2 diabetes as well. The meds used do affect different parts of the whole illness. The liver issues can promote hyperglycaemia, so we have meds that help the liver, we have insulin-like meds to help the relative insulin deficiency, we have meds that allow renal glucose excretion to be enhanced that helps the kidneys and helps to control sugars. etc...

Each have their  place in the pathogenesis of the hyperglycaemia and complications associated with diabetes. One class  of the new meds that affect the kidneys are protective to the kidneys and heart  in those with diabetes.That is the spill over effect of the research as we move forward. 

The genetic studies can help formulate more research and help us figure out what triggers are more common/important, and when we choose meds, which meds would work for that particular genetic aberration.

It is so complicated, but I think these studies have helped, or should I say, hopefully will help,  to remove blame from parents and promote a 3 dimensional picture of the causes and treatment of AN.
💐 




When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Enn
My apologies for the diabetes lecture. I just used that example to show that when we understand the pathophysiology of a disease process we can then develop targeted/ specific therapies to treat them. ☺️ 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
MKR
There is a thread on the forum called Perfect Storm. The hypothesis us that many people may have propensity for ED but the circumstances have not added up to create that unfortunate perfect storm for ED to come forth. 

Most often that is a growth spurt, increased exercise, slight restriction of food which together lead to a sudden drop in BMI. It often happens in adolescence where rapid brain growth requires more food in any case.

I, too know families where things are so harmonious, ED strikes as soon as the child moves out of the family environment. As it does in families who suddenly broke apart or those (like ours) where fear of diabetes turned the dinner table into a war zone.

My comfort is that at least this happened while our children have caring parents who are taking action, searching for help - that's why we are on this forum or Facebook forums.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
Quote
sandytoes

Thank you for sharing in this conversation. I come to ATDT because, like me, you all have lived this, so I value your opinions. 

I absolutely agree that any research into any aspect of an illness can result in breakthroughs that are transferable, or usable in ways previously unknown.

After reading your comments and re-reading the article, I think I know what confused me.

Exposure to this ideal [of thinness] is ubiquitous, but everybody doesn’t get anorexia nervosa,” Bulik says. “None of the sociocultural literature has ever been able to explain why.” She adds, “A lot of patients will say, ‘It was never about being thin for me, ever.’”

The author (and Bulik here) uses the term Anorexia throughout. The DSM V includes a fear of gaining weight and being fat as a required criteria for an Anorexia diagnosis, so perhaps she should have used ARFID instead, or just eating disorder.

But the entire article is about anorexia. How can you use not wanting to be thin as proof/support for a biological root when wanting to be thin is a criteria for diagnosis? 


Am I missing something?

 

Quote
Enn

Well I am not a psychiatrist and so please take what I write with a pound of salt.
I see what you have said to be two different things, @sandytoes,
1: I see what Dr Bulik says as true. That a lot of patients did not do this to be thin. A lot does not mean all. The point is that the environment can not be blamed 100% and there is something else that triggers AN (biology) 
2 : to your point about the criteria it is that once they have lost weight , yes there is a fear of gaining weight. That is true as well. 


In my mind those are two separate and distinct points and both  are true and valid . I do not see any contradiction in each of  those statements. 
My d was always tiny and did not starve herself at first to be thin, but when she was extremely malnourished, she became very scared of gaining. She could not stop the restriction. 
As for the dsm5 ,it is once  they have the illness that they meet the criteria not what may have started it. I hope I have explained myself the way that I had wished. That is just how I see it. 

💐

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Enn

I just found this:
https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t15/


The part of fear of gaining weight also has noted that they have behaviours that do not allow weight gain.
i think that is a very key point.

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
deenl
Hi sandytoes,

This is what the DSM V says about fear of gaining weight
Quote:
B. Intense fear of gaining weight or becoming fat or persistent behavior that interferes with weight gain.

I note that it is fear of gaining weight OR fear of becoming fat OR behaviour that interferes with weight gain.

My son did not want to be thin, nor did he express fears of becoming fat. He was, however, terrified of food. There seemed to be no ryhyme or reason for that fear but it did lead to behaviour that interfered with weight gain. 

Once he was very ill (Going by the DSM V, his eating disorder was extreme) he did get a sort of obsessive focus on the figures on the scales but it was sort of detached from the fear of weight gain. It was almost like he had this figure in mind because of characteristics of the figure, OCD like. All disappeared with an improvement in nutrition.

I have read many accounts by people who have had eating disorders and many have said that it did not BEGIN with a desire to lose weight or a fear of being fat. But once the went down the rabbit hole they became obsessed with the weight and thinness issues. Of course, for some people a diet is the start of the eating disorder but many of them did not have any greater desire to become fitter or lose a few pounds than the average person in the western world. So what is it that enables them to starve themselves almost to death? In my eyes that's the biology of the eating disorder. I very often fall back on this explanation of negative energy balance. It makes sense to me that it doesn't matter what caused the negative energy balance but once it is triggered the course of the illness has been set.

My own personal thoughts on the thinness/fear of fat is that it must feel really scary to feel your brain fall into eating disorder behaviours. As humans, the fear of the unknown is one of the worst things, the feeling that things don't make sense anymore. So the brain does its best to figure out what is going on and to put a logical framework around what the person is experiencing. When searching for that explanation, the brain latches on to norms in our society. And in our society the explanation that makes sense is the desire to be thin. I have always thought that the person must feel such relief to think that they are not going crazy, they just want to be thin or whatever. In some Asian countires, I believe people latch on to the stress of academic success and hundreds of years ago they latched on to religion by imitating the suffering of Jesus by starving themselves (anorexia mirabilis).

I really enjoyed the book Decoding Anorexia by Carrie Arnold. She is a scientific journalist who had an eating disorder for over a decade. The book is a great blending of her own story with the science in a way that is very understandable to the layperson.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
Quote
MKR
Well said, @Enn and @deenl!

Biology... I was amazed at how much my child changed character during ED (luckily, she has changed back to herself since) and have so much more in common with ED people around the world - whom she never met, never heard of - than her former self. It's a mechanism that is triggered at point x of energy deficit in people who are predisposed.

@sandytoes, my daughter only ever wanted bigger muscles, no "thin" thoughts. But once the over-exercise lead to weight loss, the typical ED gibberish started pouring out.

I wouldn't worry about when and how. I would focus on refeeding ASAP.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
Quote
sandytoes

Hi Enn, deenl and MKR,

Thank you so much for taking the time. You are all absolutely correct that the addition of “OR persistent behavior that interferes with weight gain” to the DSM 5 is key.


I feel incredibly uninformed, or naive, that I believed that an unintentional  weight loss leading to AN was rare, and yet that was the experience for all of your children. My child is more the stigma version: fear of fat, hated body, compared self to peers, dieted and exercised. 

The negative energy balance makes perfect sense. What I struggle with is that it does makes sense to me that it matters what caused the negative energy balance. And that is because many sufferers don’t return to their pre-anorexia selves with full weight restoration, and some incredibly do. Absolutely food is medicine, and WR is essential, but we know from so many posts here that WR alone isn’t always enough and that relapse isn’t uncommon. 

I can’t help but think that full recovery and a prevention of relapse requires knowing what causes the negative energy balance in that individual. 

 

Quote
Enn
This is a good blog.
https://www.kartiniclinic.com/blog/post/avoiding-negative-energy-balance/
I think it may aid in understanding the thinking about negative energy balance.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
Enn
And here is a podcast discussing the same topic.
https://eatingdisorderrecoverypodcast.podbean.com/e/negative-energy-balance-or-energy-deficit-in-restrictive-eating-disorders/
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
Quote
LauraCollins_US
As usual, this community is far more conversant and curious about this topic than most professional circles I run in!

I want to give some background insight on some of what some of you have observed. 

One, the article's focus on "anorexia." I actually accepted the invitation to be interviewed for this piece saying this: "

Dear Jennifer,

 

I’d be delighted and honored. I’m going to ask one favor? I rarely speak about “anorexia” on its own, for a number of reasons, but mostly because people think it is a disorder on its own and unrelated to the rest which can be a harmful idea. I am happy to talk about eating disorders, which is FEAST’s topic, of which anorexia nervosa is one diagnosis within the spectrum."

I was unsuccessful at redirecting the topic, but the journalist couldn't change her assignment at that point.

I know others who were interviewed were asked about this as well, and it's hard. The emphasis on "anorexia" as if it exists as a separate and distinct disorder is a challenge.

Here's why this is, in my observation. There is SO LITTLE research, so little money, so few researchers, so little common ground among clinicians and researchers about what eating disorders are, even, that we have to cling to the scraps of published work. In an ideal world those studies of anorexia nervosa would be followed by lots more that expands our knowledge, but there is so little funding or professional advancement to develop basic science on eating disorders we remain tied to "what is." And anorexia nervosa as the earliest identified and easiest to define (by weight) has remained the core of what we know about eating disorders. It's almost like we are talking about all cancers but only have research on melanoma. 

Ideas like ARFID (barely studied, still no evidence-based treatment support), "atypical anorexia" (same symptoms but in higher weight bodies), and bulimia and binge eating and EDNOS/OSFED/UFED are informed by what we know from anorexia research, but there is very little research on the rest.

This community is FAR AHEAD of the field, frankly, in asking the kind of questions and making the observations here on this conversation. You'd be amazed at how little training and reading and how narrow and non-overlapping the knowledge base is for many clinicians and researchers.

I love this stuff, myself, and could talk about it all day. We should be having them. I wish we could get more of these conversations in a wider way -- and I'm trying!

Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
Quote

        

WTadmin