Should you keep quiet or shout from the roof tops?

Hey, this is not a question about my illness itself but more about my mind, I dont know how I feel about my illness its taken me along time to get my head around being diagnosed at 20years old, I am not ashamed but I have kept it to myself I don't want people to treat me differently but reading on the lupus site they have said awareness starts with you, This is an eye opener because this is true.. maybe its people keeping quiet the reason no one has heard of lupus. I am abit confused what do other people do? :)

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  • I empathise totally!

    Guess it's a personal decision; my close friends know and understand but although I joined Lupus UK and a similar group for Scleroderma/ Raynaud's which I also have, I have not 'shouted it from the rooftops', neither am I ready to post tons about me and these diseases on Facebook...

    Like you, I am not ashamed or anything, but I'm still learning to live with all this. People do need to treat you differently insomuch as understanding when you can't make it out at the last minute, for instance, but I do not want anyone to pity me! I am still as mad as a box of frogs and have no intention of changing ;-)

    Do what you feel is right for you at this time x

  • Hi

    When I was diagnosed 14 years ago I was so glad that someone had finally put a name to all that was happening to me that I could have kissed the consultant - the only thing was that I had never even heard of lupus! I thought take the tablets and be cured. How wrong!

    It has taken me a long long time to let people know what illnesses I have and even now some of my family don't know - they just think I am slowly going mad! :-)

    I agree that it is probably because many of us feel like keeping it to ourselves that the word lupus does'nt get mentioned as much as cancer. MND, MS etc. but I find it hard to accept some of things this illness is causing myself so how can I explain it properly to othger people?

    I agree with Halfpint - it is purely a personal choice wether to be open about it to every one or not.

    Hope this helps - Irene x

  • When I was told that I had lupus I thought hmm I had heard of it, but didn't know much about it. To people at work I look well. To the anti coag nurse at the dvt clinic I look well. It is my last week at work I have been off since last October and yes I AM going to put that poster up that Lupus uk sent me. I'll sneak in there one day and do it. The poster should make others think how you are suffering,but they'll turn a blind eye.

    The first time I told my friend, is it contagious? I bombarded her with all these leaflets.

    Well the jobcentre is going to be interesting. First time I have had a P45 in 31 years!

  • I have just been diagnosed aged 29 and also found myself in a similar posistion. In order to get my head round it I decided to be open and honest with all. Whilst people haven't really changed toards me I have found that people are a bit more patient with me and understanding. And if I have a bad day, because they are aware they are much more willing to help!

  • Actually I think there are two quite separate issues here. One is whether to tell people, and the other is what it means to people when you do tell them. At work, people in theory knew about my lupus, but would always tell me I looked well - and far from giving me a little extra leeway, almost seemed to pile the work on. In reality I was really struggling - but so strong was my own image of myself as "someone who doesn't get ill" that I was having kidney failure before I even took a day off (and that wasn't voluntary - I went for a rheumatologist appt and was kept in hospital).

    So I think it isn't any good just telling people, unless we also can somehow explain what it is doing to us.

  • Yes I agree with MaggieS that it's important to explain to people what lupus is like to live with otherwise they have NO IDEA. And even when you do explain, they can only grasp a small amount at a time -that's why I like the 'Spoon Theory' and other explanations that make it easier for people to imagine.

    I was open with my close friends and family as soon as I got the diagnosis and I'm glad I did, so that they could be more considerate and supportive. However, it took me a long time to mention lupus to my online friends and more casual acquaintances .. but eventually I had to concede that if I didn't tell them, I would always be lying when they ask 'how are you?' .. and I hate lying.. if I feel awful, I don't want to have to pretend that I'm feeling fine. And it's sooo annoying when people tell you that you look well when you feel awful!

    I work at home so I don't have to deal with colleagues on a day to day basis so it's easier that way, but I've had to develop a good relationship with the shop owner who stocks my work and be honest about why I can't produce any work for her when I'm in a flare. It's been nice actually as she has shared with me her own battle with breast cancer, so a business relationship has developed into a deeper friendship.

    Anyway, I agree that we could be helping spread awareness about lupus so that the world is more understanding and sympathetic to us ... whether that's just talking to people or putting up posters, it's all going to help.

  • Well I guess it;s a personal decision.

    I quit my job because I was too scared to speak up, as I never told them I had an illness when I joined, they wanted to see my medical records...or else, so I quit.

    I don't regret leaving because of the way they went about it; but I think it is important to be honest and open with someone you can talk to.

    This site is great and already helped me A LOT, but I believe human interaction and a good shoulder to cry on, or shout off roof tops with is important.

    All the Best.xxx

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