chronic humor · Chronic Illness · Fibromyalgia · Humor · invisible illness · life

Facebook Support Groups, what am I missing?

What is your purpose of joining a support group on Facebook?  I know it’s a strange question but I’m really asking… 

Many months ago I joined 2 or 3 Fibromyalgia and Chronic Illness support groups and I just find them to be kind of downers… I mean, I get that people need support and turn to these groups to be lifted up.  But when I see my entire feed filled with sad stories of things in life that aren’t going right (like anyone really) and then the story ends with something along the ones of “and now I’m in a flare” or “so it’s not really Fibro related but I need prayers” or something like that…. I don’t know… It just feels more to me like councelling with a fibro spin on it.

Some of these groups have hundreds of members and it just gets to be a lot of negatively.  I’ve narrowed it down to one group now and I often think of leaving that too.  I think what’s gets to me is a comparison with other groups I’ve joined.

For example, last year I joined a running group when I was training to run a Half Marathon and although I am not currently running, the people in the group are just infectious with inspiration.  I still enjoy seeing the posts, the accomplishments, the struggles, the support and comraderie.  It’s what I think of when I think of support group. I know there’s a big difference and Fibromyalgia isn’t and can never be fun but I don’t think running is fun either.

Maybe I’m just different in what I think I need.  I’m not trying to judge others, they need these groups the way they are I’m sure.  I would just really like to find a Fibromyalgia or Chronic Illness group that has a focus on inspiring accomplishments and positive things to spite an illness that we can’t control.

If you know of such a group, I’d love it if you’d share it with me so I can check it out.  I want to communicate with people who have a certain level of understanding of what I go through and who give off a positive vibe as a whole.

Does a group like this exist?

8 thoughts on “Facebook Support Groups, what am I missing?

  1. Facebook support groups aren’t for everyone and not all are the same. I never in a million years thought I would want to be involved in a support group, because it just didn’t seem like something I’d be interested in. Then I ended up creating one for epilepsy. Not giving medical advice, but giving positive messages to help people cope and showing them that despite having epilepsy, it shouldn’t stop them from going after what they wanted to do in life. I have since taken down the facebook group due to tacking on my health issues and returning back to school, but found that I helped inspire lots of people and helped create awareness, and made a few pen pals with younger children who were first diagnosed and embarrassed. Over two years ago I was diagnosed Pelvic Congestion Syndrome and a rare compression syndrome called Nutcracker Syndrome. Normally I research online and educate myself, but since Nutcracker Syndrome was so rare I was having a hard time finding credible information and a lot of doctors weren’t educated on the subject. I ended up joining facebook groups and the users were so knowledgeable, they helped guide me in my treatment and finding the right doctor for me. Without them I’d honestly be worse off. Sure, occasionally their are some depressing posts were I see members are back in the hospital or have had failed treatments, but then I see the pouring off support from members around the world, who are trying to help and I try to look at the bright side of that. Plus, facebook allows you to hide or unfollow a page where it doesn’t show you posts so you always have that option when joining a group. But I think it’s very beneficial, especially when it comes to rare diseases or conditions that have general symptoms and can be hard to diagnose.

    Liked by 3 people

    1. That’s really what I think of when I think of support groups… Members helping others with guidance and knowledge and well wishes. I see that with the running group that I am a member of. I think we can all expect a negative post here and there but what I find us that there are just so many posts that seem more “off topic” than not and it just feels burdensome for me to weed through it all when I really do want to be supportive as well. I will say that I once had a question about Cymbalta withdrawals and I received a lot of info and advice from others who had gone through the same so it’s good to know that there is that too. Perhaps I need to just keep looking for the right group for me.

      I love your genuine and heartfelt comments. Have a great night! ❤️ Xoxo

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      1. There is also a search button for you to search certain topics that helps weed through the posts that may not be helpful to you as well. Hope that helps! ❤

        Liked by 1 person

  2. Hello Jupiter. Facebook support groups are not for everyone. But there may be on-line informational sites you find helpful. I co-administer a Facebook group and it does, at times, tend to get negative. But you must remember some of the members are new to this diagnosis and some are simply having a bad day and need to vent. There are some people in the group who decide to be the ‘helpers’ and some that are really IN NEED of serious help! Be that medical, financial or mental help. I have gone to MANY support groups, face to face, online, news letter, etc… It is only after 20 years with this diagnosis I am able to finally understand myself that not everyone is where I WOULD like them to be… In closing, some people really need support and they find it in these groups. I am proud to be providing support! You do not seem to be a gal in need of this kind of group! Keep blogging, I need to try to keep up with you! All the best! -Kim

    Liked by 1 person

  3. Hi! I’m Talia and I was diagnosed with lupus about 13 years ago. I’m in a lupus support group and I’m always toying with leaving it. I completely agree that it is a very negative place. We know our illnesses can be negative, we live with them every day. Another thing that I find challenging is how poorly informed people are about their illness and how they are coming to a group to ask questions that should truthfully be directly towards their rheumatologist. So to answer your question: you aren’t missing out on much 😉

    Looking forward to following you! -Talia

    Liked by 1 person

    1. I think you’re right… The other reason that I often think of leaving them (and have left a few) is the constant feed of questions like “does anyone else suffer from leg pain?” I mean… Yes, it’s a classic fibro symptom… Makes me feel like being sarcastic when I’m sure they are just opening up a discussion which is fine…. You’re right though… Many questions should be directed to their Dr. If someone asks if they should get their severe chest pain checked out…. They know the answer is yes so it feels more like attention seeking than looking for support.

      Liked by 1 person

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