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

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BlueRidge
D has been WR for nearly 7 months now. From the outside, her state has been good for about 6 months; started to laugh, dance, joke, say silly things, play with younger sister, make new friends, be social, try a new sport, etc. Everyone could be easily fooled that she is getting better, MUCH better mentally.

But every time I check her phone texting, emails, Instogram history, etc, I cringe and feel a knot in my stomach. She follows people with depression, she took selfie of her with a tear drop rolling down her cheek with a caption "I cry myself to sleep every night"; she sent a cartoon of a skeletal woman called Ana, comforting another skeletal girl, assuring her that she would be her BFF; she wrote dark quotes about depression, she told her BF how close she is to her "Ana" and how hard it is to leave her, etc.

Why oh why the contrast? Should I be happy that at least she is fighting (eating compliantly) and pretending to be happy and normal? Is it "healthier" to actually reveal their depression instead of suppressing/ concealing it?

I know depression was even common for the previously healthy men in the Minnesota Starvation Experiment, and as they regained their health, the depression dissipated. But the stark contrast between what my d shows outside and how she feels inside?

I am baffled.

18-y-o d dx RAN Mar 2014; WR in 3 mons but continued to gain for another 30+ lbs. ED is mostly gone though some minor remnants are still present; SH finally stopped after 2+ years; started DBT in Jun '15. "Voice in her head", OCD, body image, all slowly chipped away. I am finally breathing again and trying to enjoy life no matter what it brings me.
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Foodsupport_AUS
I have had this with my D too. I mentioned on another post that I think we see just the tip of the iceberg of what is happening inside their heads. That being said it is hard to imagine feeling the degree of sadness she says she feels without outwardly seeming to express this. One thought is that the feelings of sadness and distress are incredibly intense, and when they are there are devastating. They may not be there 100% of the time though, which is when we see them laughing and interacting normally. I can imagine that they may be more prominent when alone with one's thoughts, so then we don't see it expressed as much. 

My D used to say most days that she wished she we dead. Now it is only on occasion. She now makes plans for the future, when for a long time she didn't. I see it all as progress in the right direction.
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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momon
We had some similar stuff for a while post WR with my d where she seemed somewhat happy at times, but told us she was not happy at all. I remember asking her psych what gives with that, and he said if she really seemed happy at times she probably was. I think Foodsupport's answer is spot on, that sometimes your d probably is happy and better and sometimes still feels really bad.  Perhaps she needs what they call "tincture of time" for the brain healing from full nutrition to last longer. If not maybe she will need more psychological help, but I would still trust what you see that she is happier though she is by no means where you want her to be yet. I know that is a sad feeling.  And it is hard to wait so long for real healing. Sending you wishes for full recovery!
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BlueRidge
Thank you, FoodSupport and momon! Both of your ds were able to verbalize their feelings, though; my d has had ONE outburst on Sep 24 (almost ran away on a rainy day barefooted; when a police woman stopped and asked her why she wanted to run away, she said because her parents made her fat.) but that was it. She has been compliant in eating with some questioning/negotiation especially when we eat out. Maybe the built-up is too intense for her because she just doesn't know how to find alternative outlets. The "tincture of time" makes sense. She did say the noise is not as loud or frequent, but I suppose when she does hear it, it's still powerful.

I can't wait for our first appointment with this new therapist who practices CBT and is a specialist in ED. We will address those issues.

Thank you again! I really appreciate your sharing.

18-y-o d dx RAN Mar 2014; WR in 3 mons but continued to gain for another 30+ lbs. ED is mostly gone though some minor remnants are still present; SH finally stopped after 2+ years; started DBT in Jun '15. "Voice in her head", OCD, body image, all slowly chipped away. I am finally breathing again and trying to enjoy life no matter what it brings me.
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Torie
I'm right there with you, Taipei; similar timeline, similar situation.  Dealing with Ed is horrible horrible horrible, but at least our task with that is fairly well-defined.  The depression on the other hand - what the heck is going on and what are we supposed to do about it?  So if you figure anything out, please be sure to enlighten the rest of us.

The only thoughts I have about this are:

1) I read - and it (somewhat) makes sense to me - that the sufferer is the last to know when depression eases some (but is still an issue).  As we are exquisitely aware, we can't know what our d's are thinking ... we can only see their behaviors and hear / read somewhat random samples of their words.  So when we see the return of smiling, laughing, being able to focus on academics, it is HUGE to us.  To the sufferer, though, it is still about the same amount of horrible because they ARE privy to their tormented thoughts; that is how they measure their depression.  The difference between smiling occasionally and never is pretty obvious - to us -compared to the difference - to them - between feeling horrible 90% of the time and feeling horrible 75% of the time.  Does that make sense?

2) I think I need to *require* my d to work on resolving her depression, similar to how I require her to eat. This forum has been a tremendous help on the latter, but I'm still trying to figure out the former.  I suspect there is a guilt dynamic at work that keeps her from fighting the depression.  So maybe I need to *require* her to fight the depression similarly to how I require her to eat? I'm going to start trying:  "Here's what you want to do: Get a drivers license, perform in musical event that takes you away from home for two nights, etc.  Those are activities for healthy people.  You can pick what you want to try:  anti-depressants, EMDR, accupuncture, REALLY putting your heart into the CBT we've been paying for for the past year, etc. But you HAVE TO pick something.  Dunno if any of this makes sense or not.

Anyway, thanks for posting.  I hope we figure it out before too long.
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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BlueRidge
Torie, I went to read your profile and topics. Yes, our time lines are similar albeit many differences. I believe my d had been restricting for 18 months to two years before we finally caught on. It took us more than two months to diagnose her (Mar) and find a hospital to medically stabilize her (NG tube at night, refeeding during the day). She was then PHP for 11 weeks from mid-Apr to July 3rd. She's been attending school (9th grade) like a normal student, managing lunch with friends on her own. The only unusual thing is going to the nurse for her morning snack but she's been doing that dutifully. Her weight has been restored and normalized and menstruation started in Sep. Outwardly she rarely, if ever, seems depressed; upset at times (at me) but never depressed. She actively seeks out opportunities to do things such as joining a recreational volleyball team (from Sep to Nov) taking guitar lessons ( will start in Jan), hanging out with new friends she's just made (because we just moved back from overseas and she had to start a new life in the midst of her illness). She even filled out an application form, hoping to work part-time at a grocery store. I don't feel I need to push her more. She's been on antidepressant and antipsychotic for nine months.

The thing is she never verbalizes (unlike Kitty in Brave Girl Eating) BDD, self-loathing, low self-esteem, anxiety, etc, although she is suffering from ALL these issues. She is holding everything inside.

Thank you for pointing out the different perspectives between the sufferer and caregiver. As I see tiny progress, she probably feels losing grounds and defeated, hence leading to further depression.

I am counting on what all the success stories say, waiting for the switch to flip, waiting for the brain to heal with steady nutrients, waiting for her to come back to me, to love me again. Meanwhile, I/we ( with h) am/are doing all we can, pulling all the resources to help her.

Let's continue to compare notes. This is truly hard~

Thank you for listening.

18-y-o d dx RAN Mar 2014; WR in 3 mons but continued to gain for another 30+ lbs. ED is mostly gone though some minor remnants are still present; SH finally stopped after 2+ years; started DBT in Jun '15. "Voice in her head", OCD, body image, all slowly chipped away. I am finally breathing again and trying to enjoy life no matter what it brings me.
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motherofsixdaughters
Taipei, my d doesn't verbalize ANY of her depression either and we read it in her texts and fb messages and it's so scary. She is quite a bit older than your d and actually had a plan for suicide and wouldn't allow us to monitor her so now we had no choice but to put her IP at an ed place. Now she's saying she's can't come home bc we make her suicidal. It's absolutely crazy. I've lost all confidence. It's so hard as you say when they don't verbalize anything about their depression so it makes it so much more of a dark horse to deal with. It seemed easier with Kitty:/ bc at least they knew what she was thinking. I hope you keep listening to your instincts bc that's one of the many things I've learned here. You are her best advocate.
18yo D wr about to start phase 2 but at an ed inpatient for suicide

"...surely in the rush of great waters, they shall not reach him.  You are a hiding place for me you preserve me from trouble, you surround me with shouts of deliverance."
Psalms 32: 6-7
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anotherbite_CAN
I believe it takes a long time....a long, long time for the thoughts to go away.  Longer than 7 months post w/r.  We are at 3 years post w/r and my d is only now (and for past few months) been able to really articulate what she was feeing around the thoughts earlier on.  She will say now that for a good long time post w/r (more than a year) she still battled ed feelings. Her behaviour was great but there would be 'tells' that made it evident that she was still struggling with complex feelings and thoughts.  

I think the discrepancy between presented behaviour (and state) and thoughts/feelings is normal.  I don't think it is always the case but when it is....I think it is 'normal'.  There are stages of recovery.  Addressing the behavioural piece is the first order of business.  They do get to a better (and happier place) and from that place they are in a stronger place to address the cognitive piece. What helped my girl was for me to 'normalize' it.  I let her know that it was to be expected and that it was a reason for continued vigilance on our part and that in time the "cognition" would catch up with "behaviour".  There are stages of recovery.  Many find that CBT works well at this stage (when behaviour is on track).  The conversations I had with my girl were not specific to her behaviour (as she wasn't sharing what was going on under the surface)...I would bring it up randomly and let her know in a matter of fact way that it was ok if she was still having thoughts and that it was normal and part of the process.  I would let her know that others felt it also.  I didn't want her to feel overwhelmed by them or to worry that she wasn't feeling a way she was 'supposed' to.  I also let her know that it was ok to express them (she never did) and that there was a difference between thinking and acting on the thinking.  

We also did a lot of distraction for a long time.  Didn't give much opportunity for rumination.  There wasn't a lot of down time before bed for a spinning brain to spin. She actually slept in my bed for close to a full year post w/r. Nights were hard for her.  I tried to 'interrupt' the thoughts (or leave little time for them) the way I did with behaviour.  I took a 'response prevention' attitude to the thoughts too.  I monitored all social media and prevented exposure to certain things.  She did not watch a television show or go on a website that wasn't vetted for a long long long time.  She simply could not manage it.  I had to take away her phone/access to ipad more than once.  She simply couldn't stop herself from going to certain sites.  I am a firm believer in symptom interruption. Her going to websites/integram following that 'scratches' an itch is a symptom. Help interrupt it. Help her stop the spinning thoughts.  I don't think we can make them disappear completely...but I think because they do naturally linger we have to be active about closing down their exposure to anything that will trigger the thoughts.  You may get push back but she will thank you for it later.  Assume the thoughts are there, she doesn't need to verbalize them for you to help 'interrupt' them.  

I think this is what management looks like at this stage.  

You got this, mum.  Your instincts are so on.  Your girl is healing and you are still moving forward.  You are just in the stage of doing the under-layer stuff now.

D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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Torie
Really great post, AnotherBite.  Thanks.

Can you tell us a little more about the "tells" to watch out for?
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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BlueRidge
AnotherBite, I admire your tight control in managing the situation. When my d was in OPH, we had just moved back to the US from overseas and were waiting for our furniture. We used that as an excuse to have both daughters sleep with us for a few months. But now here is no way that d would agree to sleep with us, although I believe the ED are strong during bed time. Instead, she would listen to music on her cell phone.

She has been increasingly defiant and although there are coping skills to curb ED/SH thoughts, she doesn't listen to me anymore. I am relying on her dietitian new therapist (CBT) for opportunities to open up dialogues with her. The sessions are the only times when she listens to me (to a limited extent).

Monitoring internet usage is a great IDEA, but I really don't know HOW. She doesn't even let me open her door when she is alone in there, let alone finding out what websites she visits, or limiting her time of using her cell phone.

Your description of the stages of recovery offers a lot of comfort. I can't wait for her to move to the next stage.

Thank you for the sharing. You are doing such an amazing job!!! You saw a hole and you found ways to plug it right away. So far I feel the ONLY thing I manage to do is to give her food, and see more and more holes popping up. As you put it though, all theses are "normal". It's just hard to see it as normal as you see the scratches here and there, and depression-related websites in their internet history...

Thank you again!
18-y-o d dx RAN Mar 2014; WR in 3 mons but continued to gain for another 30+ lbs. ED is mostly gone though some minor remnants are still present; SH finally stopped after 2+ years; started DBT in Jun '15. "Voice in her head", OCD, body image, all slowly chipped away. I am finally breathing again and trying to enjoy life no matter what it brings me.
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anotherbite_CAN
Torie-

Her 'tells' were often tied to her particular personality (which is why so important that families be included fully and supported as we know our kids intimately and know when they are 'off').  So, if I noticed that she was particularly contrary with me out of the blue it signalled that she was struggling.  She tends to be really easy going and generally happy so a particular kind of agitation was a 'tell'

Others:  if she had difficulty sleeping;

Interestingly, a lot of the 'tells' were connected to predispositional trait behaviour.  

 If I noticed that she was taking a longer time to get ready in the morning it was something to note and keep an eye on.   (it was usually due to was struggling with picking outfits which in turn signalled she was having spinning thoughts about being judged/ not wearing right thing etc).  

Not being able to make decisions.  This is a really early tell for my girl.  If she has an uptick in indecisiveness (to the point where I notice) it is a tell.  (fear of judgment /perfectionism stuff)

 If she was procrastinating more than usual with school work it was a tell (putting off starting because anxious about not being 'perfect'....or increased rigid thinking and couldn't start because it had to be a.certain.way).  Those types of things were the early tells.  



Taipai-  closing down loopholes was a learning curve for me.  I thought I had much less ability to shut things down at first too.  Do you control the wifi for internet in your home?  can you change the password?  I used to disconnect the router (and, I have even been known to leave the house with it in my purse).   Do you pay for her cell phone?  Can you take it away for a bit?  We had to take the door off the hinges (she can't close door if there is no door to close).  I let her know that it was all for her health and that it was my job as her mum to keep her safe and love her and this was an example of my doing so (it wasn't done as punishment).  I also explained it as tied to 'stages' of recovery ....i.e. "baby, this is just where we are now-  you can't be on those sites because it is not good for where you are now".   Just as food is medicine, symptom interruption is medicine.  

Let us know  what loopholes you are struggling with and perhaps we can help think through.  Remember, you don't have to be perfect to get an A.  We can't be on every single thing perfectly.  Part of it is being bigger and stronger than the eating disorder for them.  My girl fought me (and I mean physically fought me) when I took away some of her things but it was the ed and she was much happier once it was out of her control.  The same way they are much happier when eating is taking out of their 'control'.

I relied on many members of ATDT in 2011 shoring me up and 'talking me through' doing things that scared me to death.  I felt no confidence at times.  Faking it was great advice though.  And from where we are now.....I would say projecting confidence and making my girl feel like I was stronger than the ed (even though inside I DID NOT feel that) was vital.

Sending strength and love-

D dx at 10 years old in June 2011. She is now 16 and happy and healthy.  We were IP for 8 weeks and then refed at home for what felt like forever.  We chased vertical growth for years...as is typical for the age.
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