What is your reaction to people who s... - St Thomas Lupus T...

St Thomas Lupus Trust

1,388 members127 posts

What is your reaction to people who say 'but you don't look sick'?

30 Voters
14
My response depends on who actually says it.
6
Take the opportunity to explain what lupus is.
4
Sigh in desperation.
3
Explain that you are sick even if you don't look it but don't explain further.
2
Other (leave response in replies box below).
1
Ignore them.
0
Give a brief explanation of how you are actually feeling.
6 Replies
uniqueflo profile image
uniqueflo

it is so frustrating that you need to explain yourself because people think you look so well.its such a cruel disease as it is,let alone having people think you are blagging.x

in reply touniqueflo

Yes very true - the only way is to keep educating people what lupus is.......

vibevj profile image
vibevj

Is this a compliment ?

in reply tovibevj

I suppose it could be in some people's minds. I am torn between whether I like the fact I don't look sick - so I don't have to admit to it if I don't want and then sometimes I wish I turned green or something, when I have a flare, to stop people thinking I'm being lazy...difficult one.....

Purpletop profile image
Purpletop

I actually feel good hearing it, I'm fed up feeling awful, I don't want to showing too. But I do tell people that I'm ill despite appearance.

Ruthwenthome profile image
Ruthwenthome

I work in an Oncology centre so luckily my colleagues have lots of experience of people looking well whilst being quite unwell. In saying this, I havent disclosed my lupus to many colleagues as I want to feel on an even par (this probably sounds a bit silly) and feel that if I am more open, I will allow myself to slow down more. I find as work becomes more difficult, I am having to share with more people.

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