Saturday, 28 February 2015

Finding Support

When I was first diagnosed with lupus, I didn't know where to turn for support.
Our get-together today.

That's not unusual.  In some places there are great, well-established support groups, in other places, there isn't.  Support groups have to be started by someone.

I eventually found the Lupus Association of Queensland, not because there was some big, organised entity with that name.  No. It exists because a lovely lupie named Gail couldn't find any support when she was diagnosed, and took the initiative to find some other people in the same situation.  She found Annie, and between them, they have organised informal get-togethers on a fairly regular basis for quite a long time now.

There are a lot of lupies who owe a great debt of gratitude to these two ladies who, despite their own health problems, went out of their way to create a community. Although ALQ has a name that sounds like some big official organisation, it really is a community, a network of lupies who are there for each other on-line, with an occasional get-together.  

As people living further away from Brisbane have joined the group online, it's been spreading.  There have been get-togethers over a bigger area, as other lupies have realised we can continue what Gail and Annie have started. 

I had hoped to be able to keep going to Brisbane for get-togethers after I moved, but have found that the drive is getting far too much for me.  So I offered to organise a get-together locally.  It was a great success, with about eight people there today.  

Now I have to say I have great support from family and friends, but there is something special about being able to spend time with other people who are going through the same things.  It makes a difference to be able to feel like a "normal" member of the group (even if this group's "normal" is a little different to everyone else's.)

We had a great morning, and before we left, we booked the cafe again for six weeks' time. (We weren't going to risk that I would forget to do it.) 




A special thank-you to Wray Organic Cafe and Market in Ipswich, for wonderful food, and great service, and for little extra touches (like putting apples for us in each of the place settings) that made us feel very welcome.

Thank you to Ipswich Mayor Paul Pisasale, who shared the event on his Facebook page, to help us connect with other lupies in the are who might not have already found us online. 

1 comment:

  1. Yay, Iris, great idea for that special day ! I bet some lupies felt happy to meet other lupies. Hugs, Claire

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