The Waiting Room

This could take a while...

Sunday, August 21, 2011

Non Supportive

Posted by Seeking Solace |

A question to my RA readers...or anyone else with a chonic illness?

How do you feel about online or in person support groups?

I see their purpose...giving people a forum to discuss and support each other. After all, unless you are dealing with the illness, you can empathize. But one does not truly know the ups and downs of the battle.

The problem that I see is that so many seem to be flooded with people who just want to have a pity party. Now, I am not saying that people can't talk about what they are going through and have a little whine now and again, I do that here sometimes. But, it just seems like some folks on this forum just don't want to move forward. The let the illness define who they are.

Case in point. There is a group on Facebook that I have been following which posed a question about whether it is possible to live pain free with RA. Some stated that they were living a minimal to pain free life. Others seem to dismiss it as a pipe dream. I sensed that some seem to "hate" on the ones who were enjoying an extensive period of remission. Or, they just give up.

Why?  Why the pessimism?  Is it that we want what someone else has? Does it make some people feel better to make other's feel bad about their remission? (I am curious to know from a few of my breast cancer survivor friends if this was true in their circle.)

I've had my ups and downs with this illness for the past 12 years. Heck, I had to move to find a climate that would allow me to have a life. I've been in and out of remission so many times, I often wonder when the roller coaster will end. I've bitched about the injections I have to get on a weekly basis so that I can function at at pain level of zero to 1 out of 10.  But, I refuse to allow this illness to define who I am. I will not give up the fight.

And, I certainly would not belittle one's ability to enjoy pain free living. That's what we all want, right?

6 comments:

MissDazey said...

You know I don't like the support groups for many reasons. Too many are just as you say pity parties, the "I hurt more than you" type. Several are nothing more than a way for big drug companies to advertise.

I tried the forum, groups etc a couple of years ago during a really bad time. I have had RA & arthritis for over 45 years.

philosophyfactory said...

My online dissertation support group was fantastic, and most of us who stuck with the group are now Ph.Ds...

I didn't stick around the breast cancer online support groups because the people let their diagnosis and chemo drugs become their personnas..

deb aka murphthesurf said...

I found one support group online early on and still frequent them today. They are a well grounded group though and truly support the newbies that do come. The core of the group is a strong group and even though we have lost several members over the years (they passed away), that group will always be my fall back group. Kinda like going home if you know what I mean. FB however is an interesting place that I recently discovered. I think because it is more like twitter...fast and furious it tends to be more a bit more problematic in my humble opinion and I am finding it hard to connect with users or hard to really get to know them. And yes, I do see some negativity now and then but when it gets to be a bit to much for me...I stop visiting fb for a day or two or until I have recharged my own batteries. I personally tend to view the glass as half full but I do understand where you are coming from in this post. Maybe it is time to step away from the source of negativism until you recharge your own batteries. Or you can also just not frequent this site(s) that bother you.

phd me said...

I actively avoided support groups when I was diagnosed with breast cancer. I was trying very hard to deny cancer any place in my life at all, so I wasn't going near chat rooms or pink ribbons or cancer groups. I think there was a fair bit of denial going on there... Luckily, my blog, my family and my friends provided the support I needed during the roughest patches. So, I guess I had a support group in the people that support me every day.

rented life said...

I don't participate in any support groups with my 2 chronic illnesses. I looked into it (online) for one, just to see if anyone else had treatment suggestions. I found some interesting info and tips on things to avoid. But the rest was just a lot of "yeah, that hurts for me too and none of the doctors seem to know what to do..." and that's just too discouraging. Every once in awhile I hope for new tips, but if there's nothing there I move on. Oddly enough, for that particular thing, I found support with my dad--he has the same problem but has been pain free for years. But it took a long time to get there. So every set back I have, I remind myself that it needs to take time.

For the other illness...I kind of lack in support. The groups are much like what you're describing. I think that it's just much easier for people to dismiss other's situations (for anything, not just illness). Your debt can't be as bad as mine, your pain isn't as bad as mine, my last break-up was worse...this is something I've seen in all kinds of settings, even among friends. Unfortunately it just makes us feel more isolated

To give people some credit, I wonder if some people react that way because they need an outlet to share and they don't have the skills to share in any other manner. Just a thought I had right now.

Seeking Solace said...

Thanks everyone. I was hoping I wasn't sounding too bitchy or insensitive. I decided not to follow these sites because I just don't see them as helping me on my journey.

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