How to treat chronic disease patients...our way

This is my first time participating in anything that Persatuan SLE Malaysia(Malaysia Lupus Association)organise and I don't feel like going again .The reason why I did go was because I wanted to interact with people who has the same disease as mine in Malaysia in particular.I achieved that.

The launch of World Lupus Day was held at 1 utama shopping centre (a huge shopping centre in the suburb ), the weather just now was boiling hot and I was among the earliest to arrive , I got my Nikon umbrella as a welcome gift and Nikon did a great job sponsoring goodies and cameras for this event.Before this , they held a photography competition that's open tothe public and I , A Lupus patient who joined as member only got to know about this 2 days before the closing date , not that I want the First Prized brand new SLR camera, but it would be nice if I could participate and I know I am not the only one who thinks like this.

But whats with committee members and staffs rushing to answer every question during the quiz segment? that's a bit strange to me, but nevermind... They all have Lupus too.

OK ... after the first part of the event that consist of quiz time with goodies such as T-shirts , hats etc, talks by rheumatologists and nephrologist and Q&A session which started at 10 (plus),finally there was a lunch break and I , my mum and brother went for our lunch break and I wanted to come back to the place of the event which happened to be really a tiny space by the balcony of the shopping centre's second wing.The other friends with Lupus whom I just met left.Now I know why they left...


The second part of the programme,I was invited when I did my RSVP ,to stay till the end of the event, just for you to know the second part is when the Minister of health arrives and do his speech and cutting of cakes and reading of the proclamation.

When we got back from our lunch break at a nearby cafe, we had realized that the seats are all taken and the space had been lined with the rope thingy'(I forgot the terms ok don't laugh!)why? because they are all the press and now it is the time for press conference . Some patients had to stand now , excuse me , who have Lupus now? I asked and was told that they are no place for me to seat and all of those are designated for the media .I do not want to be in this messy event , I do not expect to be treated like a princess and so does the other patients , but if you want to invite us , do not throw us away half way.I hope the committee members who by the way wanted us-patients to donate to the Association by bringing this little piggy bank had fun meeting the Minister and doing all the diva stuff.Not that I am jealous but I just do not like the concept of organising something and wanting to have my names written all over .Therefore I left and had pizza before I left(I'm stuffed till now)
If I claimed myself as someone so angelic and formed a support group or an association ,especially the one that deals with chronic disease,I would do it with a clean heart and not to have my face all over the newspaper with headline that's says/implies-"This is a good human being", and later nominate myself for a "Datukship"*.

Maybe I am slightly upset because I feel that its not right, I would not invite my guest to come and when she goes to the toilet I take the chair she sat on and give it to journalist friend of mine.Not cool isn't it.

But , but but,
I think the doctors did a great job (no complains) and I am so pleased to have known many friends who have the same disease like mine, some even invite me to go out for lunch and stuff.yes , we shall meet up real soon and I have so much confidence that we all will fight this together!

The next time, please let me know earlier if I am not invited for the second set of the event.
Lets just put a note on the event programme next time, tell me to which one can I be presence and which one you prefer to be in the spotlight without me .I should've listened to my Rheumy , Dr KK HO that I don't need to participate in any of these it would only bring me sadness.

* Datuk is a Federal title ,an award given by The King.