Spreading the disease

[windupbird]

I've been reading about eating disorders, and there is the suggestion that eating disorders have become increasingly prevalent, and that this prevalence is spreading geographically.

This made me think - do I have a responsibility not to contribute to this epidemic? Should I be careful about how I talk about my ED (not to give 'tips' or to glamorise) and be careful not to influence people who may be vulnerable?

How would I balance this with getting help, decreasing my isolation, and creating awareness of EDs?

For example, I have a friend who has often mentioned that they 'used to be anorexic'. I often think about talking more openly about my ED to this friend, but I do not want to trigger them or create a situation in which we encourage each other.

I have several other friends who has mentioned similar things. And I have occasionally said things that reveal my own behaviours.

I am wary of developing a support network that may support healthy recovery, but has a lot of potential to support the ED behaviour of both myself and my friends.

(I am speaking in terms of more extended friends, and do not mean to question the absolute importance of talking to professionals and immediate family/core support network.)

What do you think?

Does anyone have any experience positive or negative in this area?

[crazycrossstitcher]

Suggest you look or talk to ABC or BEAT - both give advice and helpful information - I am open about my ED and others have found this very beneficial - I certainly don't glamorise it - in my opinion no one in their right mind would see it as glamorous to live the hell I've lived - and I guess that's what I tell people - what its like to live with an ED - my private hell - my private prison - and others without EDs certainly began to see things very differently.

[Smarsh]

Hey,

I don't know how helpful I can be, but I have definitely had both negative and positive experiences of this. Probably more positive than negative though - a particular negative time was when I was very close with and a key supporter for a girl right in the midst of her anorexia, subsequently being hospitalised, and I visited her at home and in hospital. I'm not sure how healthy this was for either of us, especially when it came to eating together - both of us were terrified of eating more than the other and this was just a never ending circle of restriction! She ended up cutting contact, and that was very upsetting too.

So that's a negative one. But I think the main problem was that we were both quite vulnerable and neither of us had a huge amount of insight into our own conditions. Another time I had a very close friend who was self-harming, at the same time I was (successfully) giving up SH. We were close enough that I had a frank conversation with her about how I preferred if she didn't talk directly about SH in front of me as it was really triggering. That was really positive - and the difference was I had enough insight by then to know what was helpful.

Recently I have had so so many positive experiences of sharing with people about my ED/MH issues. People have related, or opened up about their own stuff, or just been able to understand me more, or felt able to ask me more directly if I'm struggling. I think it takes those who are confident to talk about mental health to be the first to start the conversation and to be advocates for those who are not ready/able/confident to talk yet. However I do think that with EDs specifically, there are unspoken ground rules and definite no-nos when talking to others with EDs (e.g. not talking numbers).

Love Smarsh x

[windupbird in reply to Smarsh]

Have you found that opening up and talking about ED/MH has helped you make positive steps toward recovery/dealing with the issues?

At the moment it feels like a big step in itself, and not one that I'm ready for. I still feel very unstable and don't have that confidence. I'm a guarded person as it is and will rarely talk to my friends about very personal issues.

Was there a particular point you reached where you were able to start talking to people? Such as a particular stage in a recovery process, or something that you did or experienced, or a change in your mental state?

Thank you for sharing your experiences, the more I grasp some understanding the less daunting the whole situation feels.

I suppose this is one of the things that puts me off opening up to my wider friendship group - I'm sure sharing and feeling less alone would help me greatly, but what if people react in a way that makes me feel more alone. That would have a very negative impact on me and my recovery effort.

[Smarsh in reply to windupbird]

All good questions! I feel like I could write a whole essay on this.

So I've tried different things with regards to being open/closed about my ED, at different stages of recovery. Before I left home I felt like my recovery was a bit constrained by people knowing my issues and therefore expecting me to act/eat/look a certain way. So when I first left home I tried out not telling anyone in the hope of 'redefining' myself. This didn't work out too well because when I did then struggle and deteriorate, I didn't have a support system already in place to notice before things got out of hand. So I don't recommend that!

I think the most important thing to consider is 'why do I want to share my experience?' A positive reason is: to be brave so that others can keep you accountable to your actions. A negative reason is: to give yourself an excuse to indulge in ED behaviours.

Here's some positive things about sharing:

- I'm certain you won't feel more isolated by sharing; it will probably help you have more authentic relationships with people

- it helps bring the dark, secret places out into the light

- it's good to get an external perspective and to get outside of your own head; it stops you from spiralling within your own thoughts and getting out of control without realising it

Here's some things to be wary of:

- your friends are likely to want to help but not know how; if you also don't know what might help, this can leave you feeling 'un-help-able' (which isn't true!) so either make it clear to them that they don't need to *do* anything, they just need to listen, or have a think about practical things that might actually help. Here's some ideas from an article I wrote: themighty.com/2017/02/how-t...

- if you open up to someone and they are positive and your relationship is deeper because of it, be aware of this ED lie: "they are only talking to me because of my ED/they only care about me because of my ED"

What would be the best case scenario/worst case scenario if you opened up to someone? x

[windupbird in reply to Smarsh]

Best case scenario would be a positive and interesting conversation that helps me understand what I'm dealing with better, but that doesn't involve heavy emotions, because I would find that stressful and I would find the conversation difficult. I'd like it to be light but stimulated. Kind of casual but open and honest, like I would talk to my friends about any other personal topic, like sex or contraception or relationships. I would not really be looking for help from my friends, just someone to talk to and bounce thoughts off. Getting things off my chest without feeling under any pressure.

Worst case scenario would be a conversation trading tips on how to cheat at recovery. A conversation that continues to perpetuate ED thought behaviours for both parties. I suppose this is what I mean by 'spreading the disease'. Worst case would also be a scenario in which a friend takes the revelation of my ill mental health as a something that they are uncomfortable with, decide that I am not the person they thought I was, or consider my hiding the issue to be an act of deceit and undermining of the friendship. Surprise would be an unwelcome reaction. As would an unwillingness to talk to me about it, or an awkwardness.

I don't want people to think 'eating disorder' whenever they see me. I'm finding socialising challenging at the moment, and I don't want to give myself any more cause for anxiety. I would like them to be my friends just as they always have, I want to feel relaxed and welcome. To able to enjoy their company and have fun with them is what I need more than anything. I don't want things to change with my friends, and at the moment there is no need for things to change, I have healthy happy relationships with all of them.

Thank you again for your detailed and thoughtful response. It's given me things to think about, it's greatly appreciated.

[lilybut]

I think people are trying to perpetuate it yes - it creates jobs for one reason and there are more sinister ones too

fightingthedemonanorexia.bl...