It's my first blog post so I will just start from saying hello to my fellow SLE sufferers!
I've had lupus symptoms for about 10 years now but was diagnosed around 6 years ago. It was quite mild at first but recently I's been getting progressively worse, despite the therapy.
So let's get to the topic. SLE support groups. Since I found out I had lupus I started searching for information on the topic and for people who are going through the same stuff as I am. I stumbled across several support groups and I have to admit I have mostly been very disappointed by them. Why? Becasue they are soooo depressing!! First, it seems that all they are offering is just basic information about the subject, no more than you can get from wikipedia website. This might be enough for people who have no idea about SLE, but come on, most of us already know A LOT! Okay, but that's just a minor thing.
Second thing, I keep hearing all these sympathetic words: I know how you feel, I know it's tough, people don't understand, obviously you are in much pain. Yes, okay. SOmetimes we need a shoulder to cry on, but most of the time we need someone to say THAT'S ENOUGH. Pick yourself up, get off the couch and do something that will make you feel better. And that's what a support group should offer. It should make you feel stronger despite of your fatigue and despite of all the crap you are going through. And you don't do that by patting people on the head and saying that we all know how bad you feel. We are what we are and we have to find ways to deal with that.
ohh.. and bake sales will not help too... I know many of us are very fond of that too, but if that's all the support group can offer to us than no wonder even in big cities the groups don't count more than 10-20 people in total. I'd love to start up a group with active, optimistic SLE people that could offer much more than what currently is avaliable. And also reach out to more diverse groups, young people, women trying to get pregnant (that can be really scary for all SLE mums-to-be), parents and everyone else there. But it just seems impossible as it seems that these groups are made by people who have known each other for ages and have their own routines and habits and don't seem to be able to look past that.
Okay, a bit controversial?