Support Pages.. The Good, The Bad, and The Ugly

I’ve recently joined a number of chronic migraine/headache disorder support groups on Facebook. I thought, Hey, why not! might as well get some support from people who really know what I’m going through. What is didn’t expect is members attacking each other for their treatment ideas, ways of life and worse off, being completely downright rude. I’ve never really been a huge contributor to these sites, just watching from the sidelines, jumping in when I feel I can be of help. my first couple of days in the group, I saw people posting, asking for prayers or just venting, and I saw an outpouring of support. I was amazed. I thought, hey, maybe I’ve found a gold mine here. I finally have found what I needed.. But near the end of my first week, I witnessed, on multiple different occasions, people being downright rude… telling others that “you cant be that sick if you’re on facebook” or “why are you in the ER, because you’re clearly not in that much pain if you’re posting here”. I was in shock. Was this page not meant to be a support page? The posts of others poured in, all against the rude poster. But I was still in shock. How could others be so ignorant of peoples personal situations. I see the same rude posters, writing that they don’t understand why doctors/friends don’t believe them. You have got to be kidding me? 3 hours ago, you were publicly shaming others for “not being sick enough and faking” and now you can’t understand why people do it to you? 

This is a constant issue I see in disorder specific support groups. People are too involved within their disorder and emotions fly…

 

I’m a big supporter of joining “non specific chronic illness support groups” because all we need are people who understand the basics of living with a chronic illness. Because deep down, we just need people who understand.

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6 thoughts on “Support Pages.. The Good, The Bad, and The Ugly

  1. Hi! I’ve been a part of Migraine/headache disorder related support groups since before FB…back in the olden days when support was in a forum-like setting, with great moderators and ground rules to keep people in check, I found an incredible family there. I may have only known them by their avatar names, but I learned so much, got so much support and felt empowered. That forum family (which is now a defunct forum) migrated to FB and I still am close to those people who I count my dearest friends.

    Unfortunately, FB changed the way a traditional support group works. I’ve been a part of some great FB Migraine/headache groups and some horrid ones. The good ones are usually “private” or “secret” and have good ground rules that are agreed upon when “joining’ the group with someone moderating. That way dysfunction is dealt with in a healthy manner as opposed to going unchecked. Unfortunately, as with any disease, there can be an unconscious undercurrent of competition for “who is doing the worst”. And let’s be honest: Hurting People hurt people. We do. We all bring our own issues to the table and each are triggered by different things. Some days we have cranky pants and some days we don’t. On cranky pants days we should probably stay away if other people’s posts are going to trigger us.

    What you express you are frustrated about in your experience with these groups is something that I have been frustrated about as well.

    When looking into a disease-specific group, what I found the most helpful from these groups are finding a few people I can relate to/connect with/feel that I could give & take with and then spend more time with them on the side chatting. One time we developed our own “secret” group of 10 people where we felt safe and comfortable to share and to be honest and to ask questions. It has been going for about 5 years. And to be honest, the best support groups I’ve found are NOT on Facebook such as restministries.com (a faith based forum) or chronicbabe.com

    I understand your stance of being in a non-specific chronic illness support group. I am really glad that you find understanding and what you need there. With the nuances of my different illnesses, I find it important to connect with people each different one because I learn so much about each disease through them- their experiences- the research- current/new treatments- and how they cope.
    Have an As Well As Possible Day!!
    Kelly

    • I am so glad you have found wonderful help through online support groups. I was once part of a “forum” type support group-my all time favourite like you said, but at the time, I ended up not needing it, then when I went back to it, it was gone. I am really happy you brought FB up, because I truly believe you’re right. I think its made it a little more open, and things can flare as groups get so large. I have definitely found some great friends through support groups and got support through them on the side. I have been lucky to find a few people with my specific disorder, and stayed in touch with them, thanks so much for reading/commenting! I love it when my readers comment:)

  2. I had a conversation recently with a fellow chronic illness sufferer who said she didn’t agree with the spoonie community because she felt is was glamorizing chronic illnesses and making it seem to outsiders like a good community to be a part of. I’ve never seen it like that before but recently I’ve been seeing a darker side to it, which I try and avoid. Personally speaking though I’ve always found it to be an extremely useful resource and I’ve met some amazing friends through networking, and without it I wouldn’t have got through everything emotionally as well as I have done. Having that common ground and support is invaluable, we shouldn’t be attacking each other or judging in anyway.
    Sending love!
    Hayley-Eszti

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