Do you ever suspect people think lupus is contagious?

[Barnclown]

No one has ever told me they think lupus is contagious...but recently someone asked me if it is.  Which made me think...and wonder whether anyone here has run into people who avoided touching them or whatever...Have you?

🍀🍀 coco

[Paul_Howard Partner LUPUS UK]

Hi Barnclown ,

We announced the UK findings from a recent survey investigating public awareness and understanding of lupus. It showed;

41% feel less than ‘comfortable’ shaking hands with someone with lupus.

38% feel less than ‘comfortable’ sitting next to someone on a bus who has lupus. 

1 in 5 people (22%) are ‘uncomfortable’ sharing food with someone who has lupus. 

There is clearly a misconception among many people that lupus may be contagious or infectious. It also showed that 26% of the UK public didn't know lupus is a disease. You can read more about this survey at lupusuk.org.uk/wld-2016-pre...

[Barnclown in reply to Paul_Howard]

OH MY GOSH...so creepy & interesting

I'd never even heard of lupus when my infant onset diagnosis was recovered 5-6 years ago...and it's never occurred to me that lupus could be contagious...and no one has ever led me to feel as if they thought I'd infect them....maybe I've been missing something.....EEEK 

It'll be fascinating to read the replies that come in to my question...

Thanks so much for your reply, paul...and thanks to everyone @ lupus uk for this research

👍🍀 coco

[ExtremeDuvetDaze in reply to Paul_Howard]

Oh my word I am shocked at those statistics, it has never occurred to me that people may actually think it's infectious but I guess that they are the ones that may have heard of Lupus but know very little if anything at all about this illness. 😫😱

[Barnclown in reply to ExtremeDuvetDaze]

Gotta be those people....but still...awful to realise this is in so many minds 😣 ...and I've never even vaguely sensed anyone thinking this way...but maybe that's down to me seldom actually talking much about lupus to anyone other than medics & other immune dysfunction patients..🤔 I do hope more replies come in to this...thanks v much for your reaction 😘🍀

[Bebe76 in reply to Paul_Howard]

Shocking and disappointing.  I saw the results of the world-wide survey (16 countries, ~17,000 people) the other day here:

lupus.org/general-news/entr...

and the numbers are even higher!

    47% feel less than ‘comfortable’ shaking hands with someone with lupus, compared with 36% who feel ‘very comfortable.’

    44% feel less than ‘comfortable’ sitting next to someone on a bus who has lupus.

    1 in 3 people (31%) are ‘uncomfortable’ sharing food with someone who has lupus underscoring that people strongly believe the disease is infectious. 23% of respondents are ‘uncomfortable’ hugging someone with lupus, with 11% of those respondents feeling ‘most uncomfortable.’

It never crossed my mind that someone would not want to sit beside me or shake my hand because I have lupus.

[Barnclown in reply to Bebe76]

YIKES

so, how do we handle this????

😧

[Bebe76 in reply to Barnclown]

Good question. Increasing awareness is definitely the key, but I know where I am World Lupus Day came and went with only a few mentions from prominent people on social media, but no mention in mainstream news. My local lupus organization depends mostly on donations to function and spread awareness and advocate for lupus patients, but donations are scarce because awareness is low. Catch-22.

When I told my family and friends after I was diagnosed, they seemed to have a vague idea of what it is, and I don't think they thought it was infectious (or maybe were too polite to ask but googled it later?). I generally don't bring it up to strangers or people I just met, so I haven't yet come across any negative reactions.

[Barnclown in reply to Bebe76]

Hmmm...my situation here is as you're describing, Bebe...although over the past 2 years, I had been  giving a brief explanation of lupus to the groups I've been giving garden lectures to (I'd gone over to asking them to contribute to my local lupus uk support group rather than give me a fee).  

I must admit, the response from these groups was v guarded (quite a contrast to their talkative response to my garden stuff).  I'd been assuming the quiet reaction was due to either my presentation skills (😜) or Brit shyness re health stuff.  Occasionally someone came up to chat about a family member with lupus.  But that was it.  The donations were generous, though.  Now I've had to give up the talks (finally have given in...it's just too much for me healthwise - after nearly 40 years of giving them).  Now I regret loosing that opportunity to tell more people that lupus isn't contagious!

So do people think other non-contagious autoimmune conditions are contagious (RA, MS, crohns, type 1 diabetes, lichen sclerosis)???

[misty14 in reply to Barnclown]

Hello Barnclown

So sorry you have had to make the difficult decision to give up your Lupus talks. Very tough because you put so much hard work into them and they mean't so much to you. X

[Barnclown in reply to misty14]

😘😘😘😘 thanks misty: you're a darling...yes, I think my feeling is: sigh 😕...although 5 years of my combined therapy treatment plan means I really do feel generally better with MUCH less pain & more stamina & resilience than I've had since my 20s...I am still the same body & psyche that has survived 62 years of the cumulative effects of infant onset immune dysfunction + connective tissue disorder...and the inevitable effects of AGE...I feel vvvvv lucky to have enjoyed the talks & met so many wonderful audiences...I'll never forget all that...but my life is in a new phase, and you all here on forum are my inspiration & concentration now 🤗🌟🍀

[Barnclown in reply to Bebe76]

💡💡💡💡BRAINSTORM...have just posted the links to the USA & UK surveys on my Facebook page...asking my friends if they have been thinking conditions like SLE, MS etc are contagious

[Penelope-Mary in reply to Paul_Howard]

Good grief! I suddenly feel the need to have a wash 😳. That's AWFUL 😱

[Barnclown in reply to Penelope-Mary]

😂🌟🌟🌟🌟👏👏👏👏🏄⛷🚣🦄👯😘

[misty14]

Hi Barnclown 

It's never happwned to me that people think lupus is contagious so wouldn't want to be near me. Shocking survey results, like you I don't know what I'd do or say if it did. I'll be interested in your replies too. Keep as well as possible. X

[Barnclown in reply to misty14]

👍👍👍👍 shocking IS the word for this, misty!  I am still trying to get my head around this....take care 👭😘🍀

[Footygirl in reply to Barnclown]

Ha Ha Ha

You wont believe this Coco but I just bought a cow bell to ring during my beloved soccer matches so my encouragement can be discerned above others...

But me, with Lupus... I have bought a bell to ring... my sides are going to burst. Oh the pain oh! Oh!

I know how sobering all this is, but me, ringing a bell 😂😂😂😂😂😂😂😂😂😂😂😂😂😂

⚽️

[Barnclown in reply to Footygirl]

👏👏👏👏🤗😘🍀

[misty14 in reply to Barnclown]

Hello again Barnclown

I couldn't agree with you more about this survey. I can't believe it either. Let's face it we don't all go around wearing placards that say I'm a lupus sufferer!. How do any of us know who we're in close contact with and the risks we run just living our day to day lives!.

Looks like lots of EDUCATION is still needed despite progress that has been made. X🎓😊

[Barnclown in reply to misty14]

👏👏👏👏👭😘🍀

[Penelope-Mary]

😳! No, thats a new one, but like contagious cancer.

I get ' what have you done to yourself' ( self inflicted wound 😆)

Me ' I have a disease'

Can I ask what it is?

Me ' systemic lupus'

'What's that?'

Me small pause with rapid brain activity and then..well, I change the topic .

Question to you all

What do you say?

PM

🙋🏼

[Barnclown in reply to Penelope-Mary]

OH MY GOSH: you could start an amazing thread with that question, PM 😆😆😆😆👯🍀😘

[Cann in reply to Penelope-Mary]

I say I have an immune system problem that doctors don't fully understand. My immune system acts strangely and gives me all manner of odd symptoms, which I do my best to manage with natural approaches including muscle testing, a natural diet, exercise, stress managing approaches and lifestyle changes because drugs so far have made the problems worse and caused more unpleasant symptoms for me.

[Barnclown in reply to Cann]

Fascinating, cann. Thanks

Slightly on a parallel track: I managed my infant onset lupus the same way until I became so debilitated in my 50s. At that point I continued all my conscientious lifestyle regimes and began on combined therapy lupus meds which, at 62, are helping me feel better than I have since my 20s...but I don't benefit as much if I slip up on the lifestyle management. I feel vvvvv lucky to tolerate & respond positively to my meds....so far, so good....

[Cann in reply to Barnclown]

I am glad they help you. I just can't let my lifestyle management slip or I am in deep trouble - any stress particularly - I have to manage it very carefully and keep positive - any negativity affects me really badly.

[Barnclown in reply to Cann]

Me too: am totally relating to this...TOTALLY! Am so glad you're here, cann. 😘🍀

[Cann in reply to Barnclown]

Yes, it is good that we all understand each other and sharing gives us the confidence knowing that we are not odd - just very sensitive to so many things, needing to be very careful and stand up for ourselves against the doubters.

[Penelope-Mary in reply to Cann]

👏🏼👏🏼👍🏼 Cann!

🌷💐🌷

PM

[Cann]

It was interesting because we were invited to a friend's second wedding a couple of years' ago in Dorset. His first wife died.

I explained that I would bring my own food due to the fact that I know which foods set off flares for me. He asked why and I explained.

I had a really strange email in reply stating that due to having many guests attending and with health and safety concerns regarding the other guests, he felt it would be best if I didn't attend.

I was very hurt as I have been to lots of wedding and no-one has questioned me taking my own food before.

However, the twist was that a few weeks later we were invited to a wedding by my cousin in Leicester which was the same date and if we had gone to the first, we couldn't have been at the second. We had a lovely time and food was not a problem for me or anything else.

I take care to explain that what I have is not contagious now, but some people know and understand all about it whilst others just jump to the wrong conclusions.

[Barnclown in reply to Cann]

WOW: great example of this contagion suspicion! Thanks so much, cann. Am going to follow your example! 👍👍👍👍🍀🍀🍀🍀

[chrisj]

I read the survey report that was posted just the other day and although no ones shown any fears or prejudices towards me, I wasn't surprised at what I read. SLE is an immune system disease and will be associated with the likes of aids and HRV...sad but true. I wish people would educate themselves before making assumptions

[Barnclown in reply to chrisj]

This seems to be it, chris....a v sad situation

[Polly2Cats in reply to chrisj]

I mentioned to someone I have an auto immune issue and they went on to suggest I get an HIV test as their friend had it and died. She went to great lengths to tell me she wasn't permiscuous like her friend. I was shocked to say the least.

[Barnclown in reply to Polly2Cats]

Am speechless 😕. Am shocked too 😤

[Penelope-Mary in reply to Polly2Cats]

😳😱! Polly!!!!!

No retort possible to that one!

[littleeffie]

Wow!!!!

I thought people avoided me because of my black biker attire, being blonde,mirrored shades and hat plus I'm a bit crazy.Well I suppose there being a different reason could be seen as a positive that it is their wrong conclusion of my illnesses being catchable as opposed to just dislike of my personality😉

Seriously though it is a concern.

How's the saying go? "A little knowledge is a dangerous thing"

These people know enough to understand it's an illness ,as opposed to a plant( worrying statistics),but don't know it's not contagious. There really does need to be some serious input by the major media to enlighten the masses.

I haven't been on here much last few days due to one of my son's falling over backwards and bumping,straining and sublaxing just about everything.A few hours ,or rather many many hours ,up A&E and we came home with splints and follow ups galore.The one thing that really irritated me was having to repeatedly repeat and explain his illnesses to both doctors and nurses and explain my need for hat and glasses in hospital as lights affect me greatly.I had to spell out and explain his Ehlers Danlos and the types 11 and 111 and do the same for my Lupus,Sjogrens.The ones who had heard of SLE didn't even know that was short for systemic lupus erythematosus so when I said lupus they didn't understand.EDS was only known by one registrar who explained it to the others as they were questioning ,from a child protection point of view,how my son could have possibly been this injured by just a fall.Thankfully it was finally understood and the others became interested to learn rather than accuse of in my head and abuse .

It just shows how even in hospitals our "invisible illnesses" are out there like badly tuned in radios- people may notice them but not get to hear clearly or understand any of it.

Wishing all a lovely weekend x

[Barnclown in reply to littleeffie]

Oh no...unbelievably believable...Effie: I think you've more than done your bit for lupus awareness month...👍👍👍👍

Hope you're having a pleasant evening at home away from all that...and that your young chap is recovering as OK as poss....

when I told my brother about the poll results re contagion he said: By the same token, lotsa people voted for Donald Trump 😉

What a world....

XOXO🍀🍀🍀🍀

[Penelope-Mary in reply to Barnclown]

😂😂😂😂😂😂!

I like your brother !

[Cal66]

A few years ago, I met my sister's ex ice skating coach, whom I hadn't seen since my diagnosis. When she asked how I was & when my mum explained to her about me having lupus her 1st words were is it contagious? I had partly expected it as she is pretty dumb & rather dippy, if I wasn't blonde myself then I would have said that she was a dumb blonde. I couldn't be bothered to get angry with her.

[Barnclown in reply to Cal66]

Wonderful cal: great example of this...am 😊😊😊😊😉🍀

[Wendy39]

Hello. Like you I had never considered this might be the case, i.e. that people might think I was contagious! It's quite horrifying isn't it. The only way to dispel this misunderstanding is to talk to people about it and explain it isn't contagious, I guess. I shared all of the Lupus UK posts on World Lupus Day and so at least my friends there now know I am not going to give them my germs!!!! One of those situations where you don't know whether to laugh or cry!

[Barnclown in reply to Wendy39]

Exactly: communication is the way to go 👍👍👍👍👏👏👏👏🍀🍀🍀🍀

[diane1428]

My mother thought it was an indignity that she had a daughter with lupus and sle. Here words were you certainly didn't catch it when you were at home.

I didn't know if to laugh or cry. Didn't bother to answer would only have made her more irate if I said I was born with it. Just wasn't strong enough at the time to put up with the argument that would follow. Thank god for my husband

Regards. Diane

[Barnclown in reply to diane1428]

Diane, gosh, it hurts to even think it, but I do believe my mother felt this way about my infant onset lupus diagnosis...which is one reason why she kept the diagnosis to herself until 5 years ago when I was in my 50s and so debilitated. Awful. Thank you for replying 😕😉🍀