I go on various Interstitial Cystitis Support Forums, under different names, for support. I 'listen', by reading, and I empathise, and I console if appropriate; I ask advice on specific issues, or I just have a moan.
Last week, someone went too far with me. I was talking about my ongoing and frustrating battle for Elmiron, and she was being too intrusive and saying how easy it was to get it in the country she lives in, oh and had I thought of writing a letter?
Maybe I was a bit short with her. It had been a long day. I said good for you; and yes I've thought of writing letters.
She accused me of snideness, sarcasm and 'abuse'.
As far as I know the forum involved have not banned her; perhaps she's had a warning, I'm not sure. I certainly reported it.
We are both suffering from the same thing; perhaps we both were oversensitive; perhaps we were both out of line.
But the personal words she hit me with went beyond anything I would dream of saying in a public forum. I was shocked.
And I wondered: are we all 'in it together'? I've never actually met, in person, anyone else with confirmed IC. All the 'togetherness' is online. And there are weirdos online, just like in real life. There are nasty people everywhere out there, healthy or ill. Just because we all have IC doesn't mean we're suddenly best buddies. It's a bit like the enforced jolliness of the school gate: a bit fake.
About Me
- rainbowgirl
- This blog is about coping with the strains of chronic illness whilst bringing up two beautiful children; it's also about the stresses of bringing up two children on your own while suffering with a chronic ongoing health problem which is at times very severe.... you can look at it either way. It's about being a single mum; it's about raising awareness of Interstitial Cystitis; it's about helping me cope. Writing this blog is beginning to bring me back to who I really am, who I really always was, before the single motherhood took over full time, before the illness set in.... a writer. I've always written, from essays to stories to journalism. This is the first thing I've written in years. It's helping me regain my confidence. PLEASE DO LEAVE ME COMMENTS AFTER MY POSTS! I'd genuinely love to hear your views on my (sometimes controversial) opinions. Thank you for taking the time to read. It would be great if you could comment so I know that you've been here and what you think.
I totally agree. some people on these places are just horrible. but then some are really nice. you just have to ignore the bullshit there will always be some, stay strong and keep writing x
ReplyDeletethank you. I have the go ahead for the Elmiron now. I'm going to write about it properly and I am actually going to start taking it on Monday, when the kids are back at school. I am TERRIFIED. But it is, after all, a chance.
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