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Discussion Starter · #1 ·
I hope you don't mind me asking this but does anyone else find it hard to talk about lupus and how it affects you?

I can discuss it freely with my husband and I feel his family are coming round to the idea but with others I find it so hard and I try to hide it. When I was finally diagnosed 21/2 years ago one of my nurses said "Lupus but I thought that was made up for the series HOUSE".... unfortunately not!

Most of my work colleagues are pretty good and I have started opening up to some of them but even still sometimes I think some of them find it hard to understand (the ones that have a low tolerance threshold) although I think when they see me somedays looking like something that has just escaped from the graveyard and they understand a bit more each time.

Does it get easier to discuss this fickle thing we live with each and every day?

Claire xx
 

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:rotfl: I think maybe I sort of answered your question in the other thread...

I think that yes, along with true acceptance, it does get a bit easier :)
 

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Hi

I guess its how you are feeling at the time. I became real angry with myself and others. I remember telling my daughter do u realise how Ill I am when at the time I could hardly move and looked like a 180 year old woman real scary.

Im much better now but find it hard to talk about it as some people think Im OK now grrrrrrrrrrrrrrrrr. Its been thee years now I find it hard at times, so guess its just normal to feel this way. I still have a 101 questions I need to ask.

take care

dixy
 

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I was diagnosed 8 years ago, and I still haven't got the hang of talking about it. Most of my friends know, but if they ever ask me how I am my automatic response is 'fine thanks', followed by a change of subject. Same goes for my family. Most of the time they genuinely want to know, I'm the one who finds it awkward and puts up the walls. Only 3 people at work know, and I only told them because I had to. I even find it difficult admitting to my doctor that things aren't going well, and that's completely ridiculous...

I don't know why I'm like this - my mum used to overreact to illnesses, so maybe I've just gone too far in the opposite direction, or maybe I'm just too determined to prove I'm 'normal'. Who knows!
 

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Actually I can only talk to my Best friend (her ex-husband died of lupus complications many years ago), my mom, my husband and you all....the rest of the world just thinks I'm "fine" and don't understand why I don't work or do "stuff" anymore!

Stephanie
 

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Discussion Starter · #6 ·
I find that that is quite often the case Stephanie although my work colleagues have seen me looking like something that stepped out of a cemetery... or when I am looking like a zombie and being totally vacant... they know if I phone in sick I usually can't get out of bed!

Although I can be my worst enemy when people ask how you doing I say fine as someone made a comment once when I first started treatment "your always tired are you ever well" didn't go down to well and made me feel really low. There is one person (well actually two) who look at me, ask me how I am and then if I lie and say I'm fine, tell me I don't look fine......
 

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Hi Claire -

I was diagnosed 8 years ago and I still don't think I have a good answer to your question! :lol:

I don't hide it from people, but I only bring it up if it is necessary. For example, I only mentioned the fact I have SLE to my bosses at work when I was in a flare and it was becoming clear that this would impact on my work.

My friends and family all know, but some of them are more interested in finding out how I am than others. So, if they ask, I tell them. If their eyes glaze over, so be it. I don't expect them to understand, but if they ask, I do expect them to listen. For acquaintances etc. I generally just say I'm fine, unless I'm awful.

I have got quite a bit more assertive about telling people what I can't do and explaining why I can't do these things. A friend of mine recently asked me to be her witness/bridesmaid at her wedding and eventually I had to say to her, ok I can be your witness if all you want me to do is walk down the aisle near you. If you expect lots of other things (e.g. her fiance sent me an email where I was listed as 'Head Lieutenant of the Wedding') from me, I can't do it. This caused a bit of tension, but eventually it has worked out.

I also used this new found assertiveness to explain to people why I'm not interested in whatever brand new cure they are sure would work for me and also to explain why I am not going to start training for a marathon anytime soon :hehe:

I guess it all depends - at the moment, my SLE is impacting severely on my life so it makes sense to me that I am fairly open about it at the moment. When it's not impacting on me, there usually isn't a need for me to bring it up.

Hope this helps - I know I tend to ramble on as soon as my fingers hit the keyboard!

Take care - Nellie
 

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wow Fairy you could have written my answer !:rotfl:

I am working on this though-after all how can people accept me and help me if I can't accept myself and can't tell them the whole story??

Just a shame we've got such an inexplicable, unknown illness !:rotfl:

Love Rachel
 

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I agree with a lot of the postings on here - I find it really hard to tell people about my Lupus - especially the ones who say "you look really well" - must be the make-up I put on most days!!.
In the last six months I have been more assertive, and that was mainly cos I had some counselling to help me cope / come to terms with my condition.
There is a lack of insight and understanding about SLE - this site is a great support, as is my hubby ( he doesn't mind me falling asleep on the settee), but his mother did blurt out at a big family gathering about my having lupus (in front of all his relatives that I had not met before) - aarrrrrrgggggggggggghhhhhhhhhhhhhhhhh.
Keep cheerful :)
 

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hiya.. I guess I feel ok about saying it but don't go into detail..there is not much point, those that know me, understand as well as they can; those that don't wouldn't understand if I had it tattooed on my forehead in big red letters and had an information leaflet pinned to my butt!! :rotfl:
 

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x_claire_x;559720 said:
those that don't wouldn't understand if I had it tattooed on my forehead in big red letters and had an information leaflet pinned to my butt!! :rotfl:
Ha, I understand that. My wife is very good about it. It's been harder for me. Everyone in our family looks to me to be the "tough-woodsy" guy. I just can't bring myself to tell people, instead I run myself down and pay for it. It's hard to give up the "outside world identity". I don't tell pople or just say it's an immune system problem. Mostly I just hide it.
 

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Claire - I think that just about sums it up - excellent :rotfl:
 

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I find it hard to talk to anyone at all other than all of you here.
I try to put a good face on, although my other half is brilliant and will listen to me if I want to talk but no one understands the way others who have it do.
I saw a friend the other day who asked why I wasnt at work and I explained I gave it up ( darent say was sacked for being sick ) due to health problems to which he replied that he had never seen me look so well so being retired clearly suited me.
How do you reply to that one ?
I just smiled and listened to his tales of his wonderful life !
Such is our life, but we have each other

Hope you all have a very good week and keep as well as you can
Pam
 

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I have to agree, I love Claires quote. I think I have given up trying to explain it because people don't understand. Those like my hubby understand and the others well, I don't mind anymore. The forum is my outlet to let off steam. I have had to learn to tell the doc how bad it is rather than say 'fine', which I can't be other wise I wouldn't be there!! :hehe:

Interesting thread! :)

Deb
 

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Discussion Starter · #15 ·
I will agree that Claire's quotes are pretty good, I'll have to try to remember it for next time. I am glad I am not the only one that feels like you are talking through your rear or to that invisible brick wall.... as you may as well be sometimes. I have those that understand and those who couldn't give a monkeys because they don't experience "illness" of any kind therefore it does not exist...... Pants to the lot of them I just hope one day they don't have to experience what some of you guys go through and even me some days.

Look after yourselves

Claire xxx
 
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