[Karly1964]

:sigh: Is anyone else as tired as I am of repeating your diagnosis to neighbors and aquaintances? I often have my medicine delivered or am heading out the door to a doctor's appointment when someone asks me why I am taking something or what is wrong with me. I have told everyone in the building at least one time each, several people have been told three or four times:hissy: :screamin: yet they never seem to hear me or remember what I have said. They say the same things. Oh, you have lupus? What exactly is that? When were you diagnosed with that? I have a neice, cousin, friend, who has that but I never really knew what it was. So, I take time and explain, briefly what lupus is and how it affects me. Most of the time I get that deer in the headlights look, I even had someone say, Who told you that you have lupus? Like why would I make that up? I thought about printing up a card that explains things so I can save my breath, printing up a t-shirt with the current symptoms of the day, or just making up some nonsense because people don't seem to listen anyway. I do have the precious friends and family who ask, listen and attempt to understand and offer support, for that I am very grateful That alone helps a great deal. It's like the people who ask the most repetitive questions are using them like "How are You?" You know how people ask that but don't really care or listen to the answer?:wink2: How do you deal with this? I have found that repeating myself over and over makes me irritable and angry at the intrusion. Any suggestions are welcome. Karly:wink2:

 

[tbunny1]

There are those that ask me, and really want to know, but I'm like you, I don't think most people want to get into it. So I just come out and ask them, do you really want to know, or are you just being polite? - and grin like a cheshire cat ....... :bigsmile:

 

[Clare.T]

My lupus is mainly very obvious on my face but strangely I have rarely been asked about it. I suppose because in most places it is rude to make comments about personal appearance. I am very curious about the sort of person who would ask why doctors or pharmacy, gosh, what a diabolical liberty !

Those who do ask are either just being nosey or interfering busybodies, or are caring and will have a genuine interest. In general I don't talk to people about it, only when there is need and sometimes I will say it's a bit like rheumatoid arthritis which everybody has heard of.
Sometimes I give my lupus in 3 minutes speech.
Sorry to say most people are asking out of politeness and the only answer they expect is to be asked how they are.
Truth to tell, I am not all that interested in certain topics that interest other people. I might ask politely because I know it is important to them but I do not want to know all about it.


Clare

​

 

[Katharine]

Hi there,

I have very rarely been questioned about my illness. I suppose that like Clare (although my lupus isn't visible), I have found that people find it impolite to ask.

I have had to explain a minimum to my collegues, but even there I tend to keep it as simple as possible, and I know that most people really aren't all that interested. The only thing that I did do to "educate" people at work was send them the "letter to normals" posted at the top of the family and friends section here. I only did that as some of them were having such a hard time getting used to me saying no and understanding just how bad things were. I sent it casually for lupus awareness month back in October and sort of said "If you're interested..." I never asked if they had read it. I know some did as they mentioned it later.

I have had a couple of nosey neighbours wonder why I was limping so badly and I simply brushed it off by saying "my joints are shot!" with a big smile as if it really didn't matter. I find that laughing it off goes down the best. People feel less awkward or, if they're the nosey type, it shuts them up more quickly.

Katharine

 

[ALWIN]

Yup

We've all been there Karly.

You can buy t-shirts from the internet with a whole load of different things about lupus printed on them - some educational, some down right rude and others just funny.

Can't remeber the site tho'

If you are really interested I guess soembody else on the site could point you in the right direction.

Meanwhile - beggar 'em!

 

[LolaLola]

Yes, it is hard. Sometimes we cope with it better than other times. I can be quite prickly so people think twice before being nosey. I am lucky I have friends who accept me for who I am.
x Lola

 

[someonesfriend]

Yep Alwin that was the first thing that came to mind when I read the mention of T-shirts also! :lol: Some of them are hilarious, whether or not I'd want to actually wear them if I was in your position I'm not sure (I don't have lupus), but in any case they're great for a laugh!

Some of my personal favorites (in the amusing catagory) are "My disabling chronic illness is more real than your imaginary medial expertise" and "I may not look sick, but you don't look dumb" :rotfl:

I can't post the links because they're to a commerical site which isnt allowed here, so if you want them feel free to PM me!

 

[cispence98]

YEP I get that too::wall: I most of the time just say its an auto immune disease and don't give much detail unless asked or if I know the person is really interested or if I need them to know my limitations!:explain:
I'll be honest until I was diagnosed I never heard of lupus:scratch: I had to ask my doctors 4 to be exact that diagnosed me what it was and then I began my research:writing:
I think that unfortunately the disease is not commonly talked about or given the attention it deserves if it was then we wouldn't have to explain it to others, until then I know what your talking about and as I said in another thread I started last week or so people automatically think that everything is the lupus fault (granted most of the time it is related) but sometimes its not!!Now that frustrates me!!:hissy: :tantrum: :wall: :grrr:

 

[PrincessDi]

I too have very good friends who support me all the way. The one thing that really winds me up though is when people say to me "you always have something wrong with you" and they know I have lupus and they know it effects my whole body. Of course, when I get a cold (which is only about once a year!!!), within two days I will have a bad chest infection, followed by a flare, and be wiped out for two weeks.

I am no doctor, but if someone I knew had an illness like lupus, I would be able to link the two! That feels better now I have said that.

 

[flutterbye]

Personally I think the how are you question really is a social nicety, and all the response that is wanted is a good/fine/so so and how are you? I personally wouldn't dream of discussing my health with neighbours, aquantances, people in the street, frankly I don't think it worth the energy, especially if doing so causes stress or frustration.

If you are finding yourself repeating yourself over and over again, and feel that they aren't listening or interested in the answer then I would put those people into the catergory of not worth the energy of using up words, just a hello, smile and go about your business might mean you feel less frustrated.

I keep my conversation about my lupus etc on a need to know basis mostly, of course their are those dear people in my life who do trully care.

I do think that I would feel uncomfortable wearing something with lupus emblazoned across my chest as a way of discouraging questions though, it seems to me would draw more attention to myself!