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Discussion Starter #1
Would love to know if there r any Scottish people on site. Everyone i speak 2 around this area has never heard of Lupus. Is there just a lack of knowledge in general. If so how can we as sufferers raise the profile of this disease.
I desperately want family and friends etc to understand my condition without having to stick information under their nose.
Thanks Gwennie x
 

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Hi Gwennie.

I'm from glasgow.

Most people I know have never heard of lupus and if I explain they cant relate
they same way they could if someone says they have athiritis.

I try to educate people but when they get a glazed look in their eye I give up.

My daughters and sister are fantstic the rest probably just think I'm lazy.

June
 

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Another Lupie from Glasgow here :wavesmile:

There are a few Scottish lassies but not so many laddies :hehe:

It can be very frustrating explaining to friends and family. I put together a very short overview and gave it to those that I knew genuinely wanted to support me. I have to say that I lost a couple of friends as well which has made me extremely guarded in who I tell.

In the last few months I've started to come across more people that 'know someone with lupus'. I recently went into my local Boots Pharmacy and the pharmacist asked if I was on any other meds. When I told her she said she had Lupus too and was diagnosed at 9 years of age!

I find that if I drip feed info it is absorbed better - like mentioning famous people with it, or that it is more prevalent than multiple sclerosis, cerebral palsy and leukemia. People seem to be more receptive to that than too much at once. I hate that glazed over look.

It can take time but stick with it - those that care will be willing to listen.

Hugz, :hug:

Pam xxx

P.S. What's with the weather here! Feels like we're in a hurricane :eek:
 

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Discussion Starter #4
Thanx for replying

Cheer guys for ur advice,its good to know that were all in the same boat.
Trying to convince family etc of a totally invisible illness is the most frustrating thing of all. I spend most of my time consumed by guilt at not being able to do the simplest of tasks. Does anyone else out there struggle with silly things like blow drying ur hair,having a bath,doing dishes?
I really am beginning to feel like such a lazy slob!!!!!!!
Luv Gwennie x
Ps Im in the Scottish Highlands and the weather has gone completely bonkers!!! Its actually quite frightening!! High winds torrental rain. What next??
 

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Dear Gwennie, Yes I am not in Scotland but to answer your question re. blowdrying hair etc. Oh Yes! Also hanging out washing, carrying even light things, or when I am really bad even lifting my feelt with shoes on! We can all identify what you are saying.
x Lola
 
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