A reader of the Around the Dinner Table online forum wrote to F.E.A.S.T. in July and then followed up in December 2009
for the Patients Speak series
July 21, 2009
… unfortunately, what all you parents need to know is that the BEST most of us long term sufferers can hope for is symptom management! Most of us don't enter treatment centers thinking something will unlock the magic key in our heads to make us "all better." We know that won’t happen. We tend to live out lives in periods, out of treatment, trying to do life relapse, end up back in patient, get out , try to live life (go to school have Friend's, etc), relapse, go back to treatment, etc... So the success of a treatment center is not necessarily if it lets us recover, but how long we can anticipate being in the "real world" before we relapse bad enough for people to scream and shout that we need to be back in the hospital. Maybe I am overwhelmingly pessimistic here---having a bad night or something. There’s a reason EDs have a high mortality rate...and that the mortality rate does not even include the number of patients who commit suicide because the disorder get to be too much. Treatment of EDs is grossly inadequate for adults and "chronic sufferers." I say this to implore all you parents out there to keep fighting for your child's recovery. I have faith in this method!
Maybe the other lurkers lurk for the same reason i do, maybe they are jealous. Maybe they are trying to get their head around how a parent could love their child enough to do this treatment? Maybe they, like me grew up in a home where we were physically, emotionally and sexually abused by our parents.(I'm not the FB poster who specifically said my parents became abusive) Or maybe they were just neglected and their parents were unaware that their child lost 30 lbs in two months...maybe that is why they lurk here, because from the outside looking in....maudsley sounds pretty freaking great. It sounds like a cure, or as darn near to it as I’ve ever heard. It’s also just plain nice to see parents like you caring for their kids. I started purging as a second grader and was fully into anorexia at fourteen----I wish with all my heart that my parents had been capable of doing what you guys do- yeah it would have been uncomfortable, but maybe it would have saved me the past 17 years of suffering...
It’s unfortunate that maudsley is NOT available to everyone....there are times where i have thought I would LOVE it if someone cared enough about me to say "no matter how you fuss and cry you are going to eat this!" But not everyone has a person on their life capable of doing that. Some of us really are fighting this all on our own- us and those centers that are-no, not perfect either. So are there options for independent adults out there????? Modified maudsley, perhaps??? I know my RD and T and GP all tell me "just eat" but you all know I JUST CANT DO THAT! I'm not able to let myself do that no matter how badly I want to.
I dunno....I'm sorry for breaking the rules about patients not posting....but I hope this post is not deleted as i mean it more as an encouragement to parents to really fight to get their children well, and to let them know they should be SO thankful that they, as parents. are capable of helping their child, because many parents are NOT able to do that. Please do not be mad at me for breaking the rules... :(
December 5, 2009-12-06
Hi Laura Collins,
A while back I broke a rule by posting on a thread about the facebook discussion. I just wanted to share what was on my heart and I got a lot of feedback form parents so I thought it would be kind to update them on how I’m doing. Please feel free to post this on the message board.
Basically, when I wrote that post I was one deaths door- or as near it as I ever have been. Maybe. I was ending up in the hospital all the time, fainting in class, failing out of classes and just really really sad. My weight was low and I was told on a number of occasions that people wanted to hold me down and force feed me when I was out and about. Yes, people can be rude. Looking at the pictures, I still don’t see that, but maybe that’s "the disease talking." At any rate, I flat refused to go inpatient, basically because my only viable options were general psych ward which I knew in my heart would not help me.
Anyways, over the summer I went on a med for anxiety that apparently makes me gain copious amounts of weight. And have an appetite. I didn’t know it was the med at first as my team swore up and down that it was not a side effect. I tried restricting my calories but the weight kept coming on. I was in complete distress. I hated the weight. I fortified my supports (and looked for treatment scholarships.) A mentor from my church was/is of great, great encouragement and was a bit of a mother figure that I needed/need. All the support basically helped me stay distracted from the ugly weight gain. I decided to follow my dietician’s meal plan in the hopes it would balance out the weight gain and sate my hunger. And then after shattering a tooth due to an ED behavior, I stopped purging. Pretty much, life sucked and I was sure I was going to be so miserable forever this lasted several months.
And then something changed. I swear, I recognized it pretty quickly...Something in my mind just started WORKING. I could concentrate, I could articulate a sentence (lol,) I could think about something other than my weight, My DBT classes/skills actually started making SENSE to me and I could see how they were useful (I highly, highly recommend DBT to longterm AN/BN patients. Having an ED for so long made me miss out on learning the coping/interpersonal skills that people normally learn as they age) I was suddenly interested in more than surfing ED websites (including around the dinner table) and holy smokes- I could actually look in the mirror without gagging- I was actually finding things to like about myself both physically and otherwise! When this thinking pattern started to immerge, I knew, just KNEW, it was because of the weight gain. (This is only the second time in my life I have gotten to my target weight range--and yeah, the weight gain just magically stopped once I got to a specific range.) I’ve never had my thinking so very cleared as it has been the last few months. I keep thinking of the studies you all mention on this website and in my heart I knew that I needed to use the weight gain (accidental or otherwise) to springboard me into recovery. I still had HUGE addiction issues with the ED behaviors- and THAT is the part I needed help from my team/mentors for. By addicted to the behaviors I mean not that an ED is an addiction in and of itself (I hardly ever subscribe to that theory) but there was for me a desire to use the behaviors for the sake of using them, if that makes sense. I was also able to CHOSE in some areas where I really had no choice before. I was able to choose not to obsess over certain things and to assign my team parts of the recovery that I could not manage. I had my RD fully take over weighing me as I found it way too anxiety producing to see the number creeping up and up. I started doing so well, I hardly recognized my life. My thinking had radically changed even though my situation and support (out patient vs. inpatient) really had not changed so much.
Not long ago, I caught a bug, and really got a chance to compare full nutrition thinking to---well, anything less than full nutrition thinking. ;) It was NOT pretty. I thought for sure my goose was cooked as I started skidding towards a very rapid relapse. All the old thinking was back in a flash. I felt like the last few months of good had not even happened. I took every ounce of strength I had to fight the ED voice and reach out to my supports. I hit the autopilot and scarffed up my meal plan repeating the mantra "full nutrition---there’s a scientific explanation for your thoughts and full nutrition will make the voices go away..." I was put on an accountability system and that helped, as I really didn’t want to let my mentor down. I’m pretty much back to normal/healthy/fully nourished thinking now. And it feels really good.
I definitely feel like I got a "lucky break." I mean with the weight gain. There’s no way on earth I would have consented to gaining weight, and there was nobody around to *make* me gain weight and because I couldn’t/wouldn’t go inpatient- I’m also lucky my compensatory behaviors were not enough to prevent the weight gain. So every time I really really really feel like relapsing...I remind myself that I might not be so lucky next time. I might not gain the weight accidentally and might get stuck down the rabbit hole of ED thinking (i.e. not know how distorted my thinking has become.) Now I worry if I notice I skipped a meal because I'm now afraid of the "anything-less-then-full-nutrition thinking." During times that I feel a relapse coming on I surround myself by all the positive things that I HAD to miss out on while I was so physically sick. I remind myself that I can’t have "just a little bit of the ED." By nature, my ED is very much an "all or nothing" player. Reminding myself of what I really stand to lose if I relapse is keeping me on track now---and knowing HOW TO USE MY OUT PATIENT TEAM is helping loads! I wish there was some profound bit of wisdom I could offer parents/caregivers/therapists/doctors and most especially patients. Sometimes I feel guilty that I got to full weight restoration by mistake, because if I had been able to figure a way out of it then I could impart my knowledge to other people who don’t have someone to help them get there. I guess I would just say to find a way to get to full nutrition and weight restoration. It takes a few months after that for the thinking to turn, but trust the process, you will get there. Load up on support from anyone who will help, support groups, your church, your friends, and community mental health if you don’t have insurance--or even if you do, I suppose.
Right now, I can’t promise myself I will never ever relapse again. I’ve had way too chronic a condition to feel brave enough to say that just yet. But, I have faith for the first time in a really long time that I can actually live a life outside of the ED. And actually, a HUGE part of that goes to lurking around the dinner table. If I hadn’t been able to hear the science behind the ED thinking and starvation, I don’t think I actually would have recognized it when my thoughts started to change. I certainly would not have realized how important it was to get full nutrition ALL THE TIME in order to eventually combat the ED demons in my brain. And I don’t think I would be so vigilant about my intake now. I think working on trauma and emotional issues is a BIG part of treating an ED--but I don’t think i would have known to look beyond that part of the puzzle if it were not for this forum. So I am really grateful
I’m sorry that I have written quite the book here, Miss Collins. I guess that once my fingers got to flying I realized there was a lot on my heart. I hope you will share this with parents on any of your websites (maybe a before and after from my original post, haha). I just want my experience to help and encourage others. Thank you for what you are doing, it’s changing and saving lives, for sure!
-Borrower (with a capital B)