11 April 2010

Shunned from an online recovery community

The technique is effective and stunning. It is akin to shunning, which has been used by various religious sects and cults throughout the centuries to keep people in line — a member does something wrong and she is immediately cut off from the community. No contact. Access denied. The person is not worthy to be part of the community until she repents of her sin and delivers a mea culpa, promising to sin no more.

Last night, I went to my page at MentorCONNECT and saw a large, white square stating that I was banned from the community for two weeks. I started to cry, thinking what have I done?

I soon received my answer via e-mail. Apparently I had written a blog post which was considered "triggering" to some other members who reported it. This was not the first time I had written a blog post which was reported as triggering. (I will talk specifically about triggering a little later.)

I joined this community with the highest of hopes. The basic idea behind MC is to connect someone with an eating disorder with someone who is recovered with an eating disorder, the idea being "relationships replace eating disorders." The community also contains a variety of pro-recovery groups, such as recovery music,  how to deal with having an eating disorder while in college and others.

I started this blog, Leaving ED, initially to write through my feelings as I struggled with recovery from anorexia. I was surprised when people started reading my blog and following it via Facebook and Google. I felt gratified people felt my words worthy of reading, and the support given by my readers through the past years have often sustained me through some very dark times. I thank you and hope you continue reading, just as I have read many of your blogs and have been moved and enlightened by your struggles, hopes and honesty as you move through this journey of life.

MC also has a place to post blogs. I liked that idea; I enjoy writing and feel I have many things to say and sometimes do it well. I read through a few blog posts to get a feel for what other people were posting, and while I admit I did forget one rule with one of my MC blog posts (I mentioned weight, which is strictly verboten), I tried very hard to not write things that could be considered triggering.

I first got an idea that my writing style and MC's incredibly unrealistic view of what should and shouldn't be written about (any mention of restricting or other eating disorder behaviors also is strictly forbidden) with "Acceptance???". I posted this in November 2009.

I wrote about my struggles to accept my body's additional weight and not feeling as if I conform to society's standards about what is beautiful, and it was a depressing post. But I do not feel it was anti-recovery. I was in recovery; I was moving forward and was finishing up my first semester of graduate school. But anyone with anorexia struggles with the weight gain, no matter how much she knows it is needed, and sometime accepting your new (and larger) body can be hard.)

I posted it on MC looking for words of support, just as I had written words of encouragement when I read about someone struggling restricting or bingeing or purging behaviors (I later found out that these posts also were swiftly removed and the writers either suspended, banned temporarily or forever.)

The next day I went to my MC page, looking for those words of hope. The white box, prominently featured in the middle of a colorless background, told me I had been suspended. Shunned. Cut off from the community.

I was stunned. The explanation was in my e-mail — my post had triggered some people and I could return in a week IF I could show I wouldn't do it again. I couldn't force myself to eat dinner that night, and I struggled with eating for several days afterward. I felt awful.

MC continued to send its daily and weekly mentoring moments via e-mail. These daily e-mails reminded me that I had failed, that I might have had actually hurt someone through my words, and were very triggering. Each one made me think I wasn't good enough, that I had failed at recovery and being part of a pro-recovery community. Each day, I felt worst and I wondered why I didn't just tell them to stop sending me the e-mails. My doctor advised me to leave MC because being suspended was hurting me so much. (He also felt the site and my increasing use of the Internet were taking the place of real-life human interactions.)

I didn't listen.

I returned to MC with much trepidation; I was afraid to post anything. I began to ask myself how helpful is an online recovery community if I was filled with fear every time I wrote anything, even if it was just I was having a bad day? I also received an e-mail from a former member who left after she tried to convince the administrators that a group for women 40 and older might be helpful (ironically, MC started such a group after this woman left.) She explained in-depth how uncomfortable she felt there and why she needed to leave for her continued recovery.

MC suggested running each blog post past one of their administrators before placing it on the site. I did that a few times, but I began to feel my writing was not completely honest. I was censoring myself because I was so afraid of again being suspended.

But I was suspended again after I wrote about being afraid of food in January 2010. It is almost impossible for me to describe how hurtful that was; the feeling of rejection was just one factor contributing to a downward spiral that I am still struggling with today.

Still, I wanted to be part of an online recovery community and I decided to try MC one last time. I began to relax a little when a few other members commented positively on my (censored) blog posts.

Then there was yesterday. A member posted on my MC page that my blog posts "inspired" her and gave her hope for recovery. Her comment inspired me to post "You are so much more than your body size." I was very moved by this statement by my doctor (it made me want to cry and it made me think) and wanted to share it. After posting this blog post, one woman on MC wrote she could relate to my struggles and had had this same conversation with her husband the night before.

That was the last comment I was allowed to read. I went back to the page about an hour later. The white box stated I was banned for two weeks. Shunned. The support community was not available to me. Because I had made a mistake. Because I am human.

I had had enough. Part of recovery includes eliminating toxic influences from your life and I didn't want spend the next two weeks crying and berating myself for being so stupid as to write a blog post that talked about the realities of recovery from eating disorders. I deleted my page (you are allowed to do that via the white box) and e-mailed MC, giving the group notice that I would not be returning.

I refuse to compromise my writing. Anorexia is a complex disease and recovery does not occur in a linear fashion, but instead moves in twists and turns and can manifest itself. Restricting and purging and cutting and many other behaviors do happen while recovering. We in the eating disorders community need to open the doors wide and be honest about the realities of recovery. We are either part of the problem or part of the solution, and I believe total honesty is part of the solution.

I also see my doctor's point about MC and other online recovery communities replacing real-life human connections. This experience has taught me that what I really need and crave are those connections, the everyday face-to-face experiences of talking with people, giving them hugs, the give-and-take of conversations which can include anything from talking about your struggles to the latest book you have read.

Besides, I already have an online recovery community right here. On Leaving ED, I can be as honest as I want and know that most people will not judge nor shun me. The support I receive here is phenomenal; I can't thank all of you enough who have read and posted supportive comments through the years. Your support has sustained me, your struggles have moved me, and your courage has inspired me.

15 comments:

Eating Alone said...

They sound like jerks! I've never been on that site. I post my blog for me. I read you blog for me. Does it trigger me? Not so far. It has made me think. And I have been very sad for you at times. But these are your struggles, not mine. And I have learned ways to steer clear of somethings by seeing what you have gone through. Keep posting honestly.

Support!

Aliquant said...

I'm sorry you were treated so badly by people supposedly offering support. Unfortunately it happens far too often and not just on ED sites; I've seen it happen in other online support communities such as those dealing with self harm and OCD, as well as in statutory mental health services.
I'm not sure why it's so common - people seem so afraid to talk about certain subjects for fear of triggering others that the slightest reference can result in a ban or withdrawal of service. Others I think feel incompetent to deal with the tougher issues or anything that's not strictly textbook so any deviation from that is 'punished' by withdrawing services. Either way it never makes sense to me why people are prevented from accessing sources of support just because they want to talk about the relevant issue!
If we always have to cover up the truth and sugar-coat our experiences for fear of upsetting someone or not fitting in neat little boxes, it just ends up alienating people and adds to the stigma we all have to fight against.

I'm glad you've left that site and that you chose to talk about it here where you know you're not going to be censored. I hope people who run that place (and others with the same mindset) get to read how pointless and damaging their rules are.

Jessie said...

This is horrible and I think you did exactly the right thing in choosing to leave it. You don't need that kind of garbage nor do you need to spend your time stressing over everything you write. Your writing is so honest and beautiful and there is nothing wrong in writing about your struggles.

xoxo

jessa said...

When I've been in treatment, there are the rules about not mentioning any "behaviors" by name (restricting, purging, cutting). It is confusing when the different staff members seem to have different thresholds for how much of this they are willing to tolerate. Eventually I started to ignore the thresholds of the staff and pay attention to how the other patients felt about these potential triggers. If I knew that everyone in the room was okay with being relatively explicit, I would loosen up a bit. If I knew there was someone who was very uncomfortable with specifics, I would respect that and not mention them. (This did not always match up with staff thresholds.)

I think it is important to be able to talk to a group of people whose threshold matches your own fairly well, so that you don't have to feel like you are censoring yourself because that is just a continuation of the hiding that happens in EDs. I also think it is important to respect the boundaries of others by not forcing yourself across their threshold (not that you did, as they can just click away from reading your blog). With a big community, I think they are cautiously conservative to make sure no one's threshold is crossed. Their conservative stance makes sense to some degree, but they could certainly stand to be more sensitive about it.

Tiger said...

grrr. you have an eating disorder. there are things that happen with eating disorders, regardless of being in recovery or not. people restrict, they binge, they purge, they are put on NG tubes. facts of eating disorders should not be considered triggering. and. people offering support should be supportive.
geez.

thinking of you.

Silly Girl said...

I enjoy your blog. I think what they did is so wrong. You made the write decisions. A lot of your posts have given me at times things to think about. Keep up the excellent job you do.

Narky (Karita) said...

I understand this. I was a member of a forum, but as soon as I started mentioning things I had done that did not fit with their views of how I should handle my illness I was judged. They didn't suspend me, they just judged me. Worrying about what they were thinking of me took too much toll on me and I removed myself from the forum last month. It hurt me to do that because I had considered the people there to be my friends, but you are right - sometimes toxic influences have to be removed.

I'm glad you have this blog to be yourself.

jessa said...

Is it terrible of me to say that there are a lot of recovery oriented communities that I would not want to be a part of? There is a lot of Pollyanna-ness in a lot of those places, and I do not do Pollyanna-ness. Sticking prettily written out affirmations to my mirror, having groups where people heap disingenuous compliments on each other, reframing realistic (though depressing) thoughts and beliefs into optimistic lies, linguistically refusing to acknowledge large parts of the experience of EDs (i.e. using the word "behaviors" rather than anything specific); those are the Pollyanna-ish things I am talking about. I want those things to be available for the people who find them helpful, but I do not like them or find them helpful. I don't want to be part of a community like that.

Angela, I thoroughly appreciate your acknowledgment of the ugly parts of EDs. Having an ED is isolating and reading your accounts of the icky parts makes them seem less shameful, which makes them less scary and less powerful. You are honest that there are setbacks in recovery, which helps me feel less like a failure and a walking disaster for having my own setbacks. You acknowledge that recovery sucks, which it does, which is honest and tells me I'm not alone in acknowledging that. This is something I find helpful.

Nicole said...

I am really sorry this has happened to you. I think honesty is an essential part of the recovery process. It is so disheartening that this organization would push you away when you were trying to reach out for help. I'm sorry this has caused you so much stress.

*hugs*
Nicole

Angela E. Gambrel Lackey said...

Jessa, you perfectly describe MentorCONNECT. It was exactly like that, filled with Pollyanna-like affirmations and no mention of the real struggles that come with having an eating disorder.

jessa said...

I actually know nothing of MentorConnect. I have experienced lots of Pollyanna recovery communities, though, and what you described seemed right along those lines. It is hard to crave the honesty of the struggles and only hear Pollyanna things. It feels very alienating, like I am wrong to struggle, like my struggle means I will never recover. I don't find that helpful and I know there are others like me (here!). It saddens me to think that there might be people stuck in Pollyanna-world who feel like we do, but might never find us.

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