We should be better than this

Everyday living
1

Last week, on reading This Is MS, I encountered a girl from Indonesia. I was diagnosed in Asia and was living in Indonesia at that time.

I was alone - nowhere to turn to for information and eventually I found this forum, via the US (not for me) and another forum.

I recommended that she should come to the MSS in the UK to meet people who have MS and told her what a lovely board the EL board is. I really hope that today wasn’t the day she chose to look at posts.

There are 60 people with MS in that part of south east Asia now, mostly on Rebif and they don’t know anyone and there’s no message boards in Australia, the nearest place.

This girl is Chinese Indonesian. I’m ashamed - ashamed of the way people have been treated on here, with stupid jokes and horrible comments.

We should know better. I treat people as I’d like to be treated. It worked for me in Asia.

This has been a truly horrible day on this board.

2

Thank you for posting this Lapreguicera.

I thought by posting about why racist jokes encourgae racism, people would understand why it isn’t being ‘a lilly livered do gooder’ to object to them.

I didn’t expect a load of abuse because of my avatar and horrible, racist comments from people who should know better.

3

What racist abuse was used against you FA?

All i saw was someone say your avatar is a pic of a black woman, i may have missed what people believe to be racist.

4

Oh btw, the Indonesian girl is called Linda. You can find her on TIMS and no, I didn’t make her up to prove a point. She, like many Christian Indonesians, is of Chinese ethnic origin.

5

Stay strong Fanny xxx

And yes, you are right, Lapreguicera. A sad day indeed.

I hope your friend from Indonesia chooses another day to visit here and sees us in our usual mode of being kind and supportive to each other which is why we are really all here after all…

B

6

I am appalled by some of the reactions that I have just read to Fanny’s post. I did not expect to witness such blatant racism on this board. I am so shocked by some of these comments. I agree Katrine, it is a sad day on here. Let’s hope this doesn’t happen again! Teresa xx

7

“stay strong fanny” my inner child is giggling,

I think we need to vent from time to time, but the admins were right to lock that thread. What makes the forums great is that we are all very different but (from what i have seen) great helpful people!!

We just need nudging in the right direction from time to time.

Darren

8

I didn’;t say racist abuse was used against me in the post but that horrible racist comments were made and that I had a load of abuse because of my avatar.

p.s. ‘Stay strong Fanny’ made me giggle to - I had a picture of clenching bum cheeks

9

mods if you’re there close this thread – it’s going nowhere!

10

Didn’t get round to replying to this excellent post yesterday, sorry K.

I too recommend this forum to others and I would have been utterly dismayed for any of them to have witnessed some of the disgusting behaviour yesterday. It appears that there are now attempts by some to drag this thread into the same area.

To them, I would say: Get over it. You are doing yourself no favours. Your attitudes are now well known and trying to make out that someone else is the real culprit is as transparent as it is foolish. All you are doing is reinforcing the opinions now held by anyone with an ounce of decency on this forum who had the misfortune to read yesterday’s threads.

11

Im sorry i read wrong you didn’t say it was too you FA,

I must admit it has to hard having ms in Indonesia, with less people effected, to talk to and no Mss. I couldnot begin to imagin having an illness that next to no one has.

Its a crazy world we live in,

take care

Darren

12

Hi Darren - yes I know, it’s okay!

When I was diagnosed, MS was unknown in south-east Asia. There was a girl in the Philippines who had some sort of progressive sort of condition that was similar to MS.

I had a lovely neurologist and as part of the immigration rules for Indonesia, we had to have comprehensive private health insurance, which was very nice, as it meant that I could fly to Singapore to see my neurologist, who was Singaporean Chinese, but trained in Edinburgh. He was wonderful - although in his late 40s, he deliberately let his hair grow long, as it was against the law for Singaporean men to have long hair. Civil disobedience!

It’s not until the matter of MS drugs comes up, that you realise just how isolating MS can be. The only drug that was licensed was Rebif and at that time (2000) there wasn’t much information as to whether it would work or not. It was even licensed in the US at that time!

Thank goodness it worked. However, it wasn’t licensed in Indonesia and so we’d smuggle it back into Jakarta, having paid cash for 3 months of injections and then sneakily claiming back the VAT at the airport.

I asked Linda, the girl from Java how many people were diagnosed with MS now and she said about 60, but that only one neurologist was experienced with the disease. There’s an association run by a church that helps pay for the Rebif, which now has been licensed in Indonesia. No more drug smuggling.

We left in 2002 and arrived back in the UK in time for the risk-sharing scheme, so I was able to carry on with Rebif and I’m still taking it now, even though we moved to Galicia (northwest Spain) in 2008.

The MS nurse is actually the Serono rep and she has patients who have been on Rebif since 1996!

So, those who think this thread should be closed, because ‘it’s going nowhere’ please think again. I think my story has some interesting points on how MS is treated and how rare it is in the rest of the world and that yes, Chinese people get MS.

13

When you consider how tough it is to cope with MS in a country where 100,000 people have got it and we all still find such ignorance about this disease, how much harder must it be to live with it in a country where only 60 people have been dx’d with it? My heart goes out to those people - we all struggle with the blatant ignorance that abounds in this country regarding MS. How much harder must it be if you are suffering from something that is really rare in your country? I hope that the more can be done to inform people about it around the world, not just where it is more prevalent! Teresa xx

14

Hi Teresa,

When I was diagnosed, people thought I had a communicable disease and wouldn’t come near me. I got my GP to write a note, explaining what MS is and that it isn’t catching.

It was a pretty lonely time, but I’m so glad I got better and managed to carry on working. My best friend was Japanese and she’d come and cook lunch for me every day and cried when I was able to play piano duets with her again. You know who your real friends are when you are diagnosed with MS…

xxxxxx

15

Hi Katrine, I agree with you - not only friends but family too. Many of them can’t handle the thought of MS and stay away in droves! Your Japanese friend sounds really caring. Teresa xx

16

Hi lapreguiceira

I couldn’t agree with you more, we should be helping each other. There is enough hassle in life without being unpleasant to each other.

I have been away and so fortunately missed all of this.

I may not agree with everyone but the vast majority of folks on here are caring, supportive people. If we stand together, we do not have to let a very small minority have an undue influence on the boards.

Anne