made fun of

I am appalled! They obviously don't have any brains worth mentioning, even if they don't know about the lupus it is insensitive to the extreme.

I recently told the people I work with about my lupus - as I started a really tough flare. This is the first job where I have ever done so in 31 years! It was scary, but worth it for the support, encouragement and caring I have had.

The thing that has been the best though, (which is weird) is that one of the girls who used to tease me and is in general a dreadful stirrer (in jest) about loads of things, now continues to tease me, but in hillarious ways about being tired, sore and old. She makes me laugh a lot and sometimes makes my day. The differnece being it is done with a sense of humour and a hug or chuckle. She makes it pretty clear she is terribly fond of me.

I am really interested in reading many posts about the brain fog. I have never had a name for it before and used to get quite embarrased and worried about myself. Since joining this site and reading the posts I now understand it is part of lupus. I sometimes now call myself "loopy Lu" to those who know about the lupus, it gives them a hint that things are not working properly in my head!!

Much love to you all. You guys have been such a strength to me.

Lyn x

Hi there,

I think a lot of this type of reaction is people really not knowing what it is about.

To be fair, lupus etc. are really difficult for even the most interested to understand. That in no way excuses adults behaving like nasty kids in primary school.

I had a colleague who basically told me outright that I needed to see a shrink because my illness was in my head (this was before diagnosis). I ended up in tears in my car (that being the only place I could hide).
I hated her for that, just couldn't be in the same room as her. So everytime I saw her after, if she asked how I was, I would smile brightly (even if it almost killed me) and say fine!! then limp off in the other direction.

To her credit, I sent a copy of the "letter to normals" to my colleagues for lupus awareness month last October and she obviously read it as she has completely changed and has now become one of the most understanding people I know. She sends me work to do at home but never stresses me, never wants it quickly and on my rare visits to their office takes time out to know how I am etc.

Anyway, I think the best way to deal with such things is with humour if possible and then, at other times, a little education doesn't go amiss, easy to say I know, as these things really hurt!

hugs to you :hug:
Katharine

People are very silly.

I like a laugh and a joke - often at my own expense.

However, my confidence hits my boots when i am struggling to think properly. If this coincides with my struggling to find the right words it's even worse. Tiredness is my bogey man.

The problem is, people can't really tell when i am feeling a bit fragile, so sometimes people say things i would cope with normally, but feel make me feel awful when i am ... well, brainfarting (yeuk!) i suppose.

I have responded more than once by telling people frankly that 'What you just said made me feel really stupid ... was that your intention?' Then I say NOTHING at all until the person has responded. I have never had anybody say 'yes i wanted to make you feel stupid'.

It does not make me feel better, but more often than not it provokes a discussion during which i can explain that yes i like a joke, but I am not feeling too great right now - the forgetfulness and confusion is a clue for future reference.

And yes claire, I too have said 'why don't you try it!'

I have had people try to bully me at work in the past by pretending to make harmless fun out of me, whilst really sticking the boot in. Several times i told them how that made me feel whilst asking them why they supposed they needed to do it.

I did not enjoy it, but i did it. I still don't know if I was doing the right thing, but it never made the situation worse.

I found keeping it inside made me feel worse and did not bother them at all, so i just stopped pretending i was bomb proof.

People are very silly.

This happened to me at work and usually I am just corrected and laugh it off. I mean it does happen to everyone whether they have Lupus or medical problems or not at least one time in their lives.

But mostly it was happening with my family members who did start laughing at me and said things to me and it did hurt because I couldn't help it. Then I just learned to laugh it off with them and it didn't bother me as much.

My hubby constantly corrects my sentences and says the right words for me. Then he says but I know what you meant. I tell him "see something is wrong with my brain, I told you this" I laugh.

I try not to let it bother me and try to laugh it off but before I would take it to heart and worry about it because I sounded really stupid using words that don't exist or just not being able to find the right word.

If they know you have Lupus, I would just say "lupus effects my speech sometimes and I cannot help it" and maybe that will shut them off, but do try to laugh it off.

We can't change what others say or do, but we can change how we react to what they say or do.

Shame on them.