Surfacing After Silence

Life. After.

Another Facebook Grumble


 

 

This is another rant post.  I had another post planned.  But I will do that later today.

New groups on facebook: “I’m a treatment runaway rebel!” and “TED hose are sexy!” (support hose used for edema)

The first falls into the camp of “I was bad in treatment and let’s laugh about that even though it probably hurt me” camp, and the second falls into the “Requiring things such as TED hose and NG tubes elevate my status in the ED world and show how sick I really am” camp.

I’ve already written about the latter.  I do want to clarify: if you need TED hose or an NG tube, I’m not criticizing you.  I had an NG tube.  I’ve needed to wear the socks for the ED.  Right now I have a pair for long drives and flying because of my heart.  Never ever did I think them sexy.  I was ashamed of them. People who have cancer and other illnesses use these same items and I don’t hear them stating how cool they are.  I hear them bitching about them.  They don’t make fun of them.

 

 

 

Then the first “camp.”  What is it with Facebook and these “it’s so cool to be a rebel” groups?  Since the internet explosion, people have used the internet to connect with and share with others who have similar medical issues.  I belong to an ARVD support group online.  We’ll joke about the things that happen to us because of the illness–the nurses, the hospital gowns, inappropriate comments overheard.  But we don’t laugh about the illness.  Because it just sucks.

But with eating disorders on Facebook, it’s become cool to state your noncompliance with treatment, even when it is obvious that noncompliance is working to your disadvantage, both emotionally and physically.  Why should we be laughing about running away or being bad in treatment when anorexia kills 20% of its victims?  I don’t find this funny.

Can someone clue me in? Am I missing the punch line?

 

 

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November 1, 2009 - Posted by | Eating Disorders, identity, recovery | , , , , , , , , , , , , , , , ,

13 Comments »

  1. I never knew that about the TED hose. I just thought they were for circulation. I’ve had to were them now for years but the Doc never said anything about it might being a sign of an ED. The things your learn.

    As to being good in treatment, well I was never in a center. And there are times when I eat something and think “wow my RD would be so proud, so I must be doing something wrong”. But That just makes me try and think of why I feel bad for eating till I’m full or eating a “fear” food or “unsafe” food. I have no idea why anyone would want an ED. I know mine “helped” me deal with some stuff, unfortunatly he hung around for 10 years afterward. He’s like the house guest that never leaves.

    Comment by david | November 1, 2009 | Reply

    • The whole “i was bad in treatment” groups are not about doing something that would make the dietician glad but your ED upset. It’s about breaking treatment facility rules and trying to get away with things.

      Comment by surfacingaftersilence | November 1, 2009 | Reply

  2. I enjoy your blog, as always. Very stimulating. However, I think people handle EDs different ways. As for me, I prefer to shed light on a sore subject because it makes it easier for me to deal with. Do I understand how life threatening it is? Yes. Have I had friends die from it? Yes. I know this. I am forced to look at it seriously virtually every day of my life. I don’t see the harm in adding humor. I think that’s you’re own eating disorder preferring to see the innocent facebook groups as a competition as opposed to the good intentioned social networking groups.
    Claire

    Comment by Claire | November 1, 2009 | Reply

    • Claire, the thing is, what you see as “innocent facebook groups” *AREN’T* innocent. They actually do harm to some people who come across them. They’re VERY triggering. There are a lot of them that are NOT intended as “good intentioned social networking groups” they actually are EXACTLY what Alexis is saying here.

      Having read Alexis’ blogs and journals for years now, I know that she has *NO PROBLEM* injecting humor into her medical issues (her heart issues, or her ED). It’s the malicious humor, or the “Ha ha, see what I got away with?” type humor that she doesn’t get. Such as the people that are in treatment, but are DELIBERATELY not complying with their treatment, then practically BRAGGING about their noncompliance.

      IDK, I guess I’m just mature enough, and have dealt with my ED enough that I’m in Alexis’ camp here.

      Comment by darkxpriestess | November 1, 2009 | Reply

      • One thing I ask is that we not consider this an issue of maturity. Using a word such as “immature” usually invokes negative connotations and the person/people it refers to can feel attacked, and I would really prefer that not to happen.

        I totally welcome differing viewpoints. I happen to disagree with Claire, and I do think that the groups I have mentioned are harmful. People who have never been to treatment centers come across them and learn how to get away with things or they acquire an attitude that it’s all right to try to get away with things or that you’re not really being a true eating disorder patient until you do.

        My first hospitalization for the eating disorder was more traumatic than anything else, but I did comply with treatment. In fact, even though I was still clinging to the eating disorder and relapsed later, I complied with treatment when I was in the hospital and as much as i could manage to do so outpatient. I’m proud to say I never started any drama, I never attempted to run, and I didn’t try to pull shit on staff.

        I don’t think it was an issue of my maturity. I think it was an issue of my desire and willingness to get better and work with the team. Even though I didn’t fully want to get rid of the ED until 2005, there was still always a part of me that didn’t want it; I was just too scared to jump into recovery full force.

        Comment by surfacingaftersilence | November 1, 2009

  3. I disagree with with Clair-and AGREE with darkpriestess and Alexis. These groups are harmful in several different ways. I don’t get why people find it funny to flaunt the misbehavior. I don’t understand. And I cetainly do not find it funny.what!so!ever!
    Perhaps it is partly an immaturity problem. But I also am leaning in the direction that it’s part of the evolution of the disease. When I was first diagnosed, it was not something to be proud of and I hid it for years. But now, I think it’s too accepted. I don’t really know…

    Comment by unknownperson | November 1, 2009 | Reply

  4. Call it immature, if you wish. I am not bothered by it considering people leaving comments do not know me or my maturity level. I think the difference between me and the rest of the people commenting is I think it’s okay to disagree. All things considered, it would be easier for me if I did agree noticing how outnumbered I am, and I was aware when I left the comment that I would be. However, I see it this way. I can leave my input and risk being rejected by people I don’t know. I can go along the same perspective and be amiable and agreeable, or I can go unheard. Personally, through struggling with my eating disorder for so long, I am sick of not being heard.

    I see where everyone is coming from as far as people coming across the groups can use them to give strength to the eating disorder. Are the groups at fault for it’s member’s wavering integrity and motivation involving their own recovery? I do not believe so, but that is merely my view. I am perfectly content with being wrong. You live, and you learn. As I made the Facebook group about TED hose, I see it as something of which I am currently struggling. I continue to have to wear the compression stockings, and it does make me uncomfortable. In spite of this, I know there are others in (or have been in) similar situations, and it is nice to tangibly witness that and hear others’ input on the circumstance. The group was created with good intentions, so for people to cross me about that is slightly unsettling, but not so much as I doubt from where I came.

    My eating disorder is not something I am proud of, but I am not in a place in my own recovery to separate that. I do not think my illness is something to hide, for a plethora of reasons. A.)The majority of my friends know by seeing me struggle throughout the years, so it would be absurd to deny it, B.) It has assisted in my becoming of a person today, and C.) While it has been miserable with it, I have made some of my closest friends through it. Do these groups keep me somewhat attached to my eating disorder? Perhaps. Do they cause me to act out on symptoms or search for new ways to deceive my treatment team? No. Regarding flaunting misbehavior, I don’t think that is conducive to my recovery, but I have recorded my own noncompliances in personal journals, and it is interesting to see how absurd my thoughts were and how far I’ve come.

    I apologize to add controversy. Maybe I shouldn’t have left my thoughts, so it would be going more smoothly. I am quite fickle about how I feel about it right now.

    Comment by Claire | November 1, 2009 | Reply

    • Claire, Please continue to post. Like I said in my reply yesterday, if there is no dialogue, there is no chance to learn from or about one another.

      And yes, there was a point where I felt that I had been silent too long and was sick of it and I had another journal at first. Now this one has more of a concrete or, rather, specific, purpose. I’d like to let people see that life after an eating disorder is possible, but that doesn’t mean everyone has to agree with me–either with my opinions on Facebook groups or on how I got to where I am. What worked for me may not work for others.

      And although you have a contrary opinion to the other commenters, that’s fine. What is impressive to me is that you have a good deal of self-awareness about your intentions with the groups and their effects. You mentioned that you journal, and as someone who is on her 30th consecutive journal, I can say that it has helped me gain insight more than anything else.

      So yes, comment. Disagree. Agree. Be neutral. But speak your mind.

      Comment by surfacingaftersilence | November 1, 2009 | Reply

  5. I love the joking about it. I am recovered, but have felt as if I’ve been left with no identity. My mother passed away six months after my “quit” date. I have three boys and a husband who could never relate and I am therefore left feeling very alone in my recovery. My brain feels comfortable around ED talk even though my body/life will not engage in the behavior 95% of the time. At least for now. It is still one day at a time, I do have to take psychiatric meds that make me feel like a failure/weak but I’ve been “recovered” for 8 years. As you all know, you can’t quit food. My food obsessions have been replaced with things that I am not so comfortable with but do keep my brain occupied. I am grateful for this website and all of the one’s like it. I don’t think they are a trigger, but at least for now the closest thing to an understanding/sympathetic ear.

    Comment by grey kitty | November 1, 2009 | Reply

  6. Claire, I hope you continue to put your viewpoints out there. I don’t know if your comment was directed at me fully or partially,( and it doesn’t matter one way or the other) but no where in my comments did I say it was wrong to disagree. Nor do I think your view of things is unworthy of being heard. I may not agree with them, but you have every right to think and believe the things you do. I think a lot of people with ed’s are generally afraid to say what they really feel, and I think it can hinder the recovery process. Writing has helped me and has given me a way to use my voice as well as giving me insights I wouldn’t otherwise have. And reading others opinions, while I may not agree with them, allows me to see the human behind what is written.
    I guess what I’m trying to say is that I can respect your opinion without knowing you.

    Disagreement with others, about anything, raises the level of debate and that is always a good thing. If we stop the discussion simply because we disagree, we lose the battle.

    Comment by unknownperson | November 1, 2009 | Reply

  7. Oops! I was the one who mentioned maturity! What I meant was, a lot of the people who are ‘proud’ of their noncompliance are the younger teenagers, who are trying to ‘fit in with the crowd’ and, how do I word this, flaunt(?) their behavior. I was in no way saying that you, Claire, are being immature! I’m very sorry if it came off that way.

    The maturity comment was in reference to my own age, and that I’m comfortable enough in my own skin that I don’t feel the pressure to fit in with a group anymore. (this is what I get for leaving comments before I’m fully awake). I guess what I should have said is “IDK, I guess I’m old enough and have dealt with my ED enough” and I’m sorry I was unclear.

    With your explanation of why you made the Teds group, I can see your point. It’s a tongue in cheek humor about them. Personally, I despise them, because they make my feet hurt (I’ve had to wear them post-surgery to fight the edema caused by the surgery and inability to walk after).

    Hopefully this time I’ve been a bit more clear in what I meant. I really do apologize if my comment was offensive, because I really didn’t intend for it to be.

    Comment by darkxpriestess | November 1, 2009 | Reply

  8. My thoughts about it, and I don’t know if it’s due to my previous jobs with adolescents, but I do see it as an immature (as in young) way to handle these things. It’s all about the way you go about it. I know that while I was struggling, my maturity level was that of a teenager. And given that fact, I would probably (and did!) handle things in a way that was probably different than a say 24 year old would have. My eating disorder delayed the emotional growth that my chronologically aged peers went through. They had better ways to handle things, I dealt with things by making a joke out of them so it decreased the seriousness and the severity of the consequences. It didn’t make it right-but is was the only way I knew how to handle it. And because most people didn’t call me on it-the only thing I got was the affirmation from people who agreed with me. I, personally, look back on what I did and cringe. But people *rarely* called me out on it, and it should have been.

    Comment by Mel | November 1, 2009 | Reply

  9. HA i love your categorizations of the groups. perfectly described, astutely observed.

    Comment by janie | November 1, 2009 | Reply


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