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  • Telling people about your lupus

    Hi everyone

    Just wondered what sort of experiences you've had telling people about your lupus. do you tell everyone? Am i just weird by not telling most people?

    I was diagnosed aged 13 so most of my close friends from school know about it because I had to have some special treatment at school. However since I went to uni I haven't really told anyone apart from my boyfriend. I'm still friends with people from school so they still know but I dont tell people at work or my uni friends. I've just found it really hard, also because a lot of my friends are also friends with people from different areas of my life I find it hard to tell one group of them and not the other. I finally told my boss the other day and I know she can't really tell the other girls at work but I wonder about telling them myself.

    What do other people do?

  • #2
    I do tend to tell everyone, but that's because I don't have the energy to try and keep various stories straight :lol:

    I don't sit people down and tell them, but if someone asks what's wrong with my skin, or why am I wearing gloves I just answer that I have a condition that makes me really sensitive to the sun. Or if I'm too tired to go out, I will say to people I'm not fit to go out, I need to rest. Sometimes they appreciate it and sometimes I'm sure they think I'm making the whole thing up - particularly if I look well.

    I started a new job recently (well I was transferred to a new company, so they had to take me lupus or no) and everyone knows I have some sort of condition that means I have a lot of hospital appointments. I don't think they could name it as lupus or know what that even means, but they all know I have something. Really the only one that should know is my boss, but I know that there would be whisperings and mutterings from other staff if I were just to be heading off on appointments and taking these as sick leave without anyone knowing why. I don't know if I would have told a few years ago - but I've been sick a lot lately and had to go on a four day week so I figured it would be easier this way.

    It's all pretty individual I think, but I think I'd find it hard to try and keep it separate when there are so many overlaps between friends and work colleagues - it's all about those degrees of separation

    Hope this helps


    • #3
      Hi there

      I think it is a very personal thing, but I prefer people to know. Of course that brings with it it's issues, such as people saying things that they think will make me feel better but actually doesn't! Most people ask questions about what lupus is, and what it can do to me, and why I got it. :wink2:

      I guess I'm lucky because I work in a department where everyone has a good knowledge of medical issues, and so they know what I have. It's been my friends and family that have needed educating!:lol:

      I find it easier that my friends know, because if I don't feel like doing something, and perhaps have to let people down at the last minute, they understand. I also sent them the spoon theory, which helped them understand my limited energy supplies.

      Take care


      • #4
        Great to hear what other people do. I understand telling people can make things easier but some if someone says they are sick no matter whether it's flu or a chronic illness you should really be understanding - my workmate doesnt get that even if I'm just feeling average she wants me to come do this, that and the other thing (and yes the cause is lupus but other people still have off days too) and for some reason I go the other way and just refuse because I feel like the only people who should know are the ones who dont mind if you say no just because you really cant be bothered getting out of your pjs. Maybe my defences just come up too easily but oh well


        • #5
          Hi Sjaneo
          I tend to tell only people I have to purely because I find it too difficult to explain myself! This has meant telling certain people at work (mainly those unfortunately that seem to think I'm a bit of a shirker and have allowances made for no reason that they can see) and those people who I think are worthy of the time it takes for me to explain!!
          When I had my last appointment I found a great leaflet published by Lupus UK which I now carry round with me for people to read. I can then answer their questions rather than trying to put it into words myself.

          It's called 'someone you know may have Lupus' and these, along with other items can be ordered from the LupusUk website. The link is here:
 (Hope I'm not breaking the rules with this) and the order form can be downloaded. Another member recently said that she uses the stickers for envelopes - I have stolen that idea and am ordering some along with a car sticker.
          I hope this helps,


          • #6
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            • #7
              Thanks Jess. I suppose for me because it wasnt interferring with my work I didnt want to tell everyone but now that it sort of is it's hard to explain to people and the longer I wait probably the harder it's getting. Oh well will get around to it one day over a coffee break


              • #8

                I prefer to only tell my close family and friends but it is a personal choice. I do not want everyone knowing my business and health issues. Since the mess madevme look bloated (prednisone) I felt really self conscience and did tell more than I would have liked just because I wanted people to know the reason. Of course, my friends in the health business knew or suspected!! I know that this is dumb but I did not want people to feel sorry for me!! People can be mean sometimes too and as a adult I should not care but I do.

                Good luck and take care!


                • #9
                  Gosh, what an interesting post.
                  I dont tend to tell anyone, anything much. Some people ask, and I say,..I'm just not 100%, thats all. I dont go into detail. My family dont even know the full picture. Its partly from how my Dx developed and took its time. In addition, I do not have any doubt that my Doc has NOT told me everything. By that I dont mean major things, but if I had a few more issues, or knew I had them, what difference would it make?
                  For other people I realise when they ask, 'how are you?' its not a question they want an answer to, or for others its about satisfying their anxieties- so i tell them I'm okay. They are hardly going to understand, or in fairness be able to empathise with the day to day issues I have.
                  Notwithstanding that ultimately its not that I dont recognise or that i'm in any denial, but I dont want reminding that I am ill. I know I am, and at 7:30 AM when I take the first batch of 17 meds, I am reminded.
                  I tell you what drives me around the bend. Its wehen people I have not seen for some time say,........ oh you look well! Its probably only out of politeness;.. and i think,... you need to feel what its like from this side of the eyelids!


                  • #10
                    I explain to people if I am comfortable with them. I walk like a ruptured duck so it is a bit of a giveaway and I am probably lucky in that I quite often look ill so there is no dispute.
                    You need to be comfortable with your diagnosis in order to explain to others, and even after years of it you can still sometimes be annoyed or upset by silly remarks and offers of miracle cures!

                    Relationship wise must be harder. I had been ill almost as long as I had known my Husband so it is not an issue.

                    My best friend is blind so we have a laugh together and sound off in a way we can't with other people .We all need an outlet, staying positive is great but none of us can do it all the time.
                    x Lola


                    • #11
                      I was going to say,...well I have to be positive because I dont have anyone to talk to about things,...... but then I rememberd,.... I can come on here and bleat!!!


                      • #12
                        Hi Lola--

                        It's always interesting to see what people have to say about this issue.
                        I really only tell those with a need to know. People who need to know are my immediate family and close friends, and sometimes even people who rely on me for something (PTA members for example, as sometimes I need to bow out of something I have said I would do). I am not working right now, but if I were, I would think it would be impossible not to tell my boss because of dr appts and flares.

                        Personally, I do believe that it is much easier to discuss this illness and the fact that I have it now that I have come to terms with it. I feel like I can actually educate people about it, and that is one positive that comes from this illness. When I am told that I am looking good, I take it as a compliment (especially if they do not know I am ill). If I am sharing pains and someone says that I look OK, that is when I try to educate. Whether they understand or not will dictate the type of contact I have with that person in the future.

                        Anyway, thanks for bringing this topic up!



                        • #13
                          Hello, all!

                          This is a tough topic. Last fall I shared with my boss because I'd had to take sick days and come in late because of dr appts somewhat more often. I've never used all my sick leave, but thought an explanation was in order. To my horror she went into panic mode. She became very upset and basically told me I should take a disability leave. I've never shirked my responsibilities and have been at this job for eight years with the same boss. It has been really awkward.

                          My immediate family knows and my kids (27, 26, 26, 21, 18 & 16) have such varied responses when I'm in a flare. My husband is so supportive. As things have progressed I think it scares my kids. Recently, due to joint pain and instability I stopped lifting my grandson or carrying him. My daughter has been great and just brings him to me so I can do all the things I would otherwise. It's nice to not feel I'm not meeting expectations.


                          • #14
                            I really understand not being able to tell people. I hate having to tell people and explain myself because I look totally normal but I have a DVT in my leg so I can't do much walking up large hills or flights of stairs. I feel that people generally judge me because I look normal. Also my mum set up a disabled blue badge card for me and I can't stand that either just the thought of people looking at me thinking why does she have that puts me off using it even if it means I have to walk further. I don't know how everyone copes with this because it really gets to me

                            Erin x


                            • #15
                              I wonder how I will ever date again.

                              Someone broke up with me before this happened for not making minor changes which i was not willing to do and I did not think it was a big deal at the time but now I do.

                              How do you tell someone you are "maybe" going to date that, OH BTW we have to stay out of the sun from 10:00 - 4:00?

                              I don't think that will go over very well.