How do you feel about online or in person support groups? Or even on FB, writing about your illness?
I see their purpose…giving people a place to discuss and support each other. After all, unless you are dealing with the illness, you can empathize. But a person 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 too. But, it just seems like some folks in this one group I have seen or on Facebook, just don’t want to move forward. They 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 fibromylgia and or lupus or arthritis. 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 and give into the pain.
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 10 years (I was diagnosed in 2003). 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. I will not give up the fight. I am going through another bout of a huge flare right now. I see the rheumy in a week. I don’t know what my next few weeks will hold or how many injections or times I will sit at the cancer/hematology center hooked up to some “stuff”. But I am not giving up.
And, I certainly will not scorn a person’s ability to enjoy pain free living. That’s what we all want, right?