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.

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alfalfa

This is an unusual post here because I am not a caregiver but am instead a 29-yr-old ED survivor. I have actually been reading this forum for many years. I grew up in an abusive household, so I do not have supportive or helpful family members and I have essentially had to learn how to parent myself through this. Through the years I have managed to apply a lot of the information and ideas that I have read here to my own recovery, and now I have a few things I would like to share with all of you lovely people (lots of these are things you already know, but I figure it can never hurt to have them reinforced). I am also willing to answer questions if you have any!

  1. Whatever target weight you have been given is ALMOST DEFINITELY TOO LOW!! I am just over 5’5” tall, and the treatment center I went to twice (a very well-respected one often recommended here) set my target weight at about 125lbs, which BMI-wise was about where I had been my whole life. About a year later, side effects from a medication pushed me to around 160lbs and everything changed. Yes, it was incredibly difficult for me emotionally to be at that much higher weight, but the eating disorder behaviors just no longer had much of a hold on me. I have stayed right around that weight for almost two years now by eating (truly) intuitively, which is something I never thought I would be able to do. So push that weight up! Will it be hard? Hell yeah! Will it be worth it? Absolutely!
  2. When we are deep in the eating disorder (and, for many of us, even when we’re not), we suck at communicating, and especially at communicating feelings.
  3. I believe, as do most of you, that eating disorders are biologically and genetically based. In other words, for an eating disorder to take hold, one must have the predisposition towards that happening. In cases of restrictive EDs, it starts with an energy imbalance (whether intentional or not), and goes from there. For some people, symptoms of other mood disorders pop up after the ED has really sunk its teeth in, and said symptoms diminish with food and weight restoration. If that’s your loved one, then yay! But a lot of us DO have underlying additional mood or other psychiatric disorders that pre-dated and/or will still exist past the eating disorder. So PLEASE keep an eye out for that. If your kid is properly weight restored and still struggling with anxiety, depression, self harm, suicidal ideation, or anything like that, get them more help! Therapy is pretty useless for someone who is malnourished, but if your loved one IS properly nourished and is still struggling, please help them access further help (therapy, medication, etc).
  4. This is something that I don’t see mentioned here too often, but instances of eating disorders are disproportionately higher in queer youth (like absurdly disproportionately higher) — and for all parts of the LGBTQ+ spectrum, not just gay males. There are a lot of reasons for this which I won’t get into here, BUT if your loved one is out, or questioning, or struggling with gender identity or sexuality, that will almost certainly impact their recovery. Make sure they have the support they need specifically around that (whether that is therapy, support groups, or more openness and understanding from their loved ones). Questions of sexuality and gender identity can appear phase-like or entirely peer-driven in preteens or young adults, but even if that’s your suspicion, seek help from a professional!
  5. Finally, and most importantly, there is a light at the end of the tunnel. I was one of those impossible cases. I had been sick for 10 years, I had been in and out of multiple treatment centers, one of which had to get a court order to forcibly tube feed me. I did not have the family support that your loved ones have, and many people (including myself) had given up on me. And yet here I am, 3 years out from my last treatment stay, in FULL recovery. I am engaged, I have a job, and I’m finally starting to deal with my trauma in a healthy and productive way.

Unlike some of my recovered friends, I have no interest in getting into the eating disorder field, but I do have a lot of knowledge and insight at this point that I’d love to share if it could be helpful to anyone.

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melstevUK
alfalfa,

Thank you very much for your positive comments - and huge congratulations on having battled this illness with so little support and come out the other side of it.  You should be very proud of all you have achieved, and of having got your life back on track.  I am so very pleased for you.

You make some very valid points and I am glad you have raised the issue of gender identity as I have come across one case where this is 'in the mix' and when I went online and researched this question, there are some areas of huge concern.  Evidently it is not uncommon now, when a young person wishes to change gender, of delaying adolescence with hormone treatment because, if there is later going to be a sex change, it is easier before the person has moved into a fully developed adult body.  I find this highly disturbing, not least because how can you be sure that this is not a 'passing phase', and when there is no brain maturity or life experience, how can the child/young person know how he/she will feel later in life?  When I read an article about sex change individuals - there is a high rate of mental health issues and suicide after gender change - so is it really the answer? 

The other thing that worries me that, if you delay growth in any way in an adolescent - that will surely involve not enforcing weight gain in a person suffering from anorexia nervosa in particular, but with other eating disorders as well?  So how on earth are you going to ensure a recovery? 

I think that this will become a question which will start to appear more in an ed setting, and clinicians will have to have some kind of training on how to deal with it - prioritising gender discussions in a gender clinic setting above re-feeding and weight gain could be dangerous. 

While I sympathise with anyone who feels they have been born 'in the wrong body' - the consequences of providing gender change operations/treatments at such a young age have yet to be reviewed in any detail to see if it genuinely is the way forward.  Also, given that risk-taking annd not thinking about the consequences is a part of adolescence, the experience of gender change is likely to be viewed with less than a full understanding of all the issues involved, and I remain apprehensive about the way society is going with regard to this 'problem'.
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
And the other point which I failed to mention is that - if ed patients are handed over to the care of gender psychiatrists, the latter are more than likely to see the ed as an expression of unhappiness with the gender issues, because they are unlikely to understand the aetiology of eds and how they are triggered by a weight deficit (as you state).. They may well think that sorting the gender problems will sort out the ed - and of course from bitter experience so many families know that this simply does not happen.  

Again, thank you for bringing this topic out in the open.  There need to be discussions around it at a clinical level asap.
Believe you can and you're halfway there.
Theodore Roosevelt.
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tmeckel
Thank you, Alfalfa, for sharing your journey and your knowledge.  You are wonderful and heroic to have parented yourself through an eating disorder and I hope you continue to share your experience far and wide!  It is so helpful for those of us who are new to this journey!!  
"The fears we don't face become our limits."  Robin Sharma
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sowego
Hi Alfalfa, its really encouraging to read about your recovery after such a long illness. Thank you for sharing it, especially for those of us with young adults. I like the term 'parent myself through this illness'- I wonder if I asked my very stuck adult D to try doing this for herself, would it help. She doesn't want this parent doing anything!
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Mamaroo
alfalfa wrote:
  1.  I have stayed right around that weight for almost two years now by eating (truly) intuitively, which is something I never thought I would be able to do. So push that weight up! Will it be hard? Hell yeah! Will it be worth it? Absolutely!

Unlike some of my recovered friends, I have no interest in getting into the eating disorder field, but I do have a lot of knowledge and insight at this point that I’d love to share if it could be helpful to anyone.



Thanks for posting about your recovery, especially since you had to rely on yourself. My question is did intuitive eating came back naturally at a higher weight or did you have to work at it? If so, what did you need to do to be able to eat intuitively? Thanks

D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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alfalfa
melstevUK wrote:
alfalfa,

Thank you very much for your positive comments - and huge congratulations on having battled this illness with so little support and come out the other side of it.  You should be very proud of all you have achieved, and of having got your life back on track.  I am so very pleased for you.

You make some very valid points and I am glad you have raised the issue of gender identity as I have come across one case where this is 'in the mix' and when I went online and researched this question, there are some areas of huge concern.  Evidently it is not uncommon now, when a young person wishes to change gender, of delaying adolescence with hormone treatment because, if there is later going to be a sex change, it is easier before the person has moved into a fully developed adult body.  I find this highly disturbing, not least because how can you be sure that this is not a 'passing phase', and when there is no brain maturity or life experience, how can the child/young person know how he/she will feel later in life?  When I read an article about sex change individuals - there is a high rate of mental health issues and suicide after gender change - so is it really the answer? 

The other thing that worries me that, if you delay growth in any way in an adolescent - that will surely involve not enforcing weight gain in a person suffering from anorexia nervosa in particular, but with other eating disorders as well?  So how on earth are you going to ensure a recovery? 

I think that this will become a question which will start to appear more in an ed setting, and clinicians will have to have some kind of training on how to deal with it - prioritising gender discussions in a gender clinic setting above re-feeding and weight gain could be dangerous. 

While I sympathise with anyone who feels they have been born 'in the wrong body' - the consequences of providing gender change operations/treatments at such a young age have yet to be reviewed in any detail to see if it genuinely is the way forward.  Also, given that risk-taking annd not thinking about the consequences is a part of adolescence, the experience of gender change is likely to be viewed with less than a full understanding of all the issues involved, and I remain apprehensive about the way society is going with regard to this 'problem'.


I totally agree with you about a lot of this! It is incredibly complicated and, like many other aspects of puberty/adolescence, is even further complicated by the presence of an eating disorder. I also agree that replacing a qualified ED treatment team with a therapist who only specialized in gender identity issues would be completely irresponsible. I do want to clarify a few things (as someone who has personal experience, has been researching this for almost a decade, and has a master’s degree in a related field).

First, and I think most importantly, you’re absolutely correct that suicide rates and the presence of other mental illnesses are statistically MUCH higher in those with gender identity issues. But, these rates actually go down in people who transition or take other measures to align their expression of gender with their gender identity AS LONG AS such measures are supported by those around them. The rate of mental illness does remain very high in individuals who continue to be bullied, harassed, misgendered, or otherwise discriminated against. Studies have shown that the percentage of people who, for whatever reason, regret transitioning is actually pretty low. So if your child comes to you with gender identity questions, assuming it is a phase or otherwise shutting those down completely will ultimately increase the possibility of suicide or other mental illnesses.

The psychiatric and medical response to kids with gender identity issues is also complicated and like ED treatment, depends on the practitioner, the parents, and the child in question. And like ED professionals, gender identity professionals range from excellent to downright harmful. Generally when a child or adolescent has persistent gender identity questions and is taken to a qualified professional, that professional’s first step is not going to be putting them on a puberty blocker or scheduling a surgical intervention. Good gender identity therapists are trained to determine with the child or adolescent whether what they’re feeling is true, genuine, and persistent, and such practitioners (like other doctors) only move forward with medical or surgical interventions if they feel it is in the best interest of the child. And while changed cause by surgery or cross-hormones are permanent, puberty blockers have been found to be very safe, temporary, and able to be stopped/reversed at any time.

Of course bringing an ED into all of this (or bringing all of this into an ED) makes a complex situation even more complicated. Like you, I hope that eventually all gender identity practitioners have a solid understanding of eating disorders and vice versa. And I also agree that weight restoration takes precedence over pretty much everything else. But my ultimate hope is that parents of kids, adolescents, and young adults with eating disorders ALSO take gender identity issues seriously. Even if you think it is a phase or peer influence or the product of malnutrition — take them to someone trained to help determine those things. Because just like an eating disorder, ignoring it can be deadly. 

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alfalfa
Mamaroo wrote:


Thanks for posting about your recovery, especially since you had to rely on yourself. My question is did intuitive eating came back naturally at a higher weight or did you have to work at it? If so, what did you need to do to be able to eat intuitively? Thanks

 



For me, it did come pretty naturally at the higher weight, although it does still require slightly more work than for the average person. Most of the time, if I expend more energy than usual, I get hungrier and eat more. But I also pay attention so that if I don't actually feel hungrier, I can make a conscious effort to eat more. I also know that when I get TOO hungry, I stop actually feeling hungry, but I make sure to eat enough anyway. So I mostly rely on hunger cues but I also know that I can't always trust them. 
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Mamaroo
alfalfa wrote:


For me, it did come pretty naturally at the higher weight, although it does still require slightly more work than for the average person. Most of the time, if I expend more energy than usual, I get hungrier and eat more. But I also pay attention so that if I don't actually feel hungrier, I can make a conscious effort to eat more. I also know that when I get TOO hungry, I stop actually feeling hungry, but I make sure to eat enough anyway. So I mostly rely on hunger cues but I also know that I can't always trust them. 


Thank you!
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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melstevUK
alfalfa,

Thank you very much for your response which has clarified a lot for me in my mind.  This is outside my own personal experience but I make a point of trying to keep up with developments on all levels and what you have said has been illuminating.  Particularly:

"But my ultimate hope is that parents of kids, adolescents, and young adults with eating disorders ALSO take gender identity issues seriously. Even if you think it is a phase or peer influence or the product of malnutrition — take them to someone trained to help determine those things. Because just like an eating disorder, ignoring it can be deadly."

In the case I became aware of - I was very concerned that the young person in question was not getting the right help - yet a referral to a gender clinic was probably the right step.  I felt it was ignoring the eating disorder - but perhaps discussions and good communication between all clinicians involved will still lead to good outcomes

My biggest concern remains that gender clinicians will still see the eating disorder as an expression of anxiety around the gender issue and ignore its significance and treatment altogether - but you have made me more hopeful that this may not be the case.

Thank you for posting and congratulations on your recovery - you have done amazingly well.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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