Describing lupus to the unaware commoner

[LottieLou96]

A young child....

What is lupus mommy? Well, lupus is latin for wolf. You see we are werewolves and your half werewolf. That's why I am tired sometimes after the full moon.

An elderly person.....

What is lupus then, is it just a 21st century fad?

Well, you know that chest pain you get when you walk, that shortness of breath, we get that erratically. That severe ischaemic pain, doesn't just go down the left arm but occurs in our fingers and toes as our limbs fail to get enough blood to them. We have to avoid more triggers than you have to avoid whilst taking your warfarin. Your arthritis gets worse with activity, where as we wake up in joint agony. You still thinks it's just a fad? One that is described and acknowledged in the literature back in the 1800s.

Oh, that don't sound too good.

You don't say.....

[sarahalice]

Love this!! Feel your pain! I've had, oh is it one if those new illnesses, looking at me up and down and them thinking, oh it's because your fat,,,,,, me wanting to scream, no I'm fat because the massive cocktail of drugs I take just to keep me semi functional.Everyone has their cross to bare, so why people aren't kinder to each other?

Wishing you all the best x

[LottieLou96 in reply to sarahalice]

It's such a dismissive and hurtful thing to not recognise one's illness visually and therefore conclude it doesn't exist or it's because of something completely irrelevant.

I definitely prefer discussing it with children, they are more open minded and accepting. Albeit be wiser than me...

I once said I was half robot like terminator, partially due to losing most sensation on the one side. This led to a herd of small children trying to hit, punch, or stab things into me lol, to check I didn't bleed or feel pain. Hahaha.

Those children still believe I'm half machine. So that's a bonus at a distance.

Stay safe x

[sarahalice in reply to LottieLou96]

🤖🤣 I imagine the kids expecting lasers to come out of your eyes!

I so sorry about the loss of sensation.

Lupus really is the Krampus gift that keeps on giving.

I'm amazed the eye rolls that I have had from strangers, inlaw family and some friends. One person who did that to me, moaned for a week when she chipped nail, lol poor thing! 1st world, healthy people problems!

X

[LottieLou96 in reply to sarahalice]

Exactly, same thing occurs in A + E daily.

You get the, I don't know why I'm here, I am wasting your time doc. The chest pain isn't too bad. - ECG showing ST elevation and a blood test troponin of 180. A massive heart attack.

And.... The six week ear ache, I'm dying doc. I think it's cancer. It's all over for me. Literally fine, has a small ear infection from not drying his ears after swimming.

Nay worry about the sensation loss, I have more than I could've hoped for, I count the 10 digits I have on my hands and I'm pretty grateful indeed. Having hands is deemed a wee bit important in healthcare.

All the best

Lottie

[diane1428 in reply to LottieLou96]

I remember telling my mother I had lupus and aps. Her reaction was well you didn’t catch it from us so don’t know where you got it from. Like your werewolf better

[LottieLou96 in reply to diane1428]

Haha, oh dear. It's completely mental isn't it?!My parents sadly hold alot of resentment towards me for the guilt they have over their genetics.

My rheumatologist always hammered home to my fam that their genetics were the direct cause, TREX1 mutation. It's penetrance is based on epigenetics and factors beyond anyone's control.

So my fam definitely air on the side of denial that lupus exists, unable to mention it in the home or over the telephone.

Other family, jumped on the bandwagon and each said they suffer from it too, so well people, fam, colleagues they are all strange ones

🤣

[debsgm]

Can’t we as sufferers move on from horrific wolf bite analogies, werewolf associations, myths etc from the days when there was so much ignorance, stupidity, no cures and gross red rashes?!

With modern successful treatments why do we keep carping on about 🐺 bites. Let’s get up to date quickly please.

Yes indeed to highlighting gaslighting by ignorant doctors and others but to wolf bites in the past?😥🧐

[Ingrid1234 in reply to debsgm]

Totally agree.

Do we want to hark back to this sort of thing?

Or even promote this sort of graphic from the dark ages of wolf bites??

From Wikipedia: lupus erythematosus in the 20th century.

[LottieLou96 in reply to Ingrid1234]

Heya there Ingrid and Debs,

It wasn't my intention to offend or cause any offensive retrograde analogies or thinking.

Today's society is a mixed bunch, what works as an explanation for one will almost certainly not work for another. By in large we should promote awareness of lupus and strive towards new therapies and treatments.

That said, I personally like to have a little 'tongue and cheek' around young children. I like them to see it as a unique superpower rather than an illness, it is a level of playful fiction for inquisitive minds.

I definitely wouldn't want people to be so backward as the images above. I would never say the Malar rash is a wolf bite, especially as a child myself with lupus my parents always said it was the Yorkshire air, and that was a good enough explanation for many years.

BW

Lottie

[Ingrid1234 in reply to LottieLou96]

“Today's society is a mixed bunch, what works as an explanation for one will almost certainly not work for another. By in large we should promote awareness of lupus and strive towards new therapies and treatments.…”===

Hi there,

Yes to your second sentence but no to your first.

Truth is one and indivisible. Mythologies about lupus can be dangerous and perpetuate further ignorance. I find that some children are actually wiser than many idiotic adults I have to bump into in my life. Sad but true.

I find that even young children can understand simple things like, “our bodies are attacking ourselves “, the basics of cellular immunology using analogy and metaphor as good teachers and parents. That is the art of good explanation and teaching without resorting to defunct wolf bite, werewolf etc suspect analogies!

If we tell children that classic malar rashes are due to “Yorkshire air” as you say isn’t that promoting further ignorance?

Of course we can use all sorts of analogy, metaphor and explanations to explain the complex science of lupus causation and treatment and that is the challenge of good teaching and parenting. Children are far wiser than we think and we should not patronise or demean them by fairytales about lupus.

Many children want to know the tough science without any sugar coatings!🧐👍

We loopies must not flinch from the constant adult put downs. I personally have found some children wiser about lupus than many ignorant and prejudiced GPs!😥🙈

I doubt if you’ll find many werewolf videos about lupus on YouTube nowadays 🧐?

[MrsMarigold in reply to Ingrid1234]

@Ingrid1234. I think Lottie Lue gave you a pretty good explanation for her chosen topic of discussion. That too many people/adults/GPs (adults as well BTW)are ignorant and/or unaccepting of our illness. Lupus is a sneaky shaggy cat on my pillow. Fur all over me day and night. She made a comparison in the original post that I believe she only meant as an example of how misunderstood the disease still is. Perhaps not the best example. Perhaps That example offends you; okay… but as a new forum member we can offer more kindness, right? I think you are correct that a lot of children understand the truth about illness and science etc… But the reverse is true too. Some children are not ready for truth. Stories are comforting. I say this as a former teacher, mother of 4, and

Grandmother. Best Regards, Titters

[LottieLou96 in reply to Ingrid1234]

True, not the best example, apologies. And yes certainly children are often more accepting then the adults we come across.

Stay safe,

Warm regards

Lottie

[Suvi8901 in reply to LottieLou96]

Most here will agree that it’s hard to get a proper lupus diagnosis and usually takes 6/7 years with many visits to docs. There’s so much ignorance and lack of understanding amongst so many young and old. Hence the science, good practice in lupus and up to date research must be continually cited otherwise the ignorant get worse!There are some excellent pamphlets here on lupus blood tests, other AI diseases etc.

I personally will always explain the science of lupus to any child first rather than use fairytales, myths and legends which could promote / reinforce further misunderstandings?🤷🏻‍♂️🤷🤷🏽‍♀️ confusion?

[Bakbre in reply to LottieLou96]

Why are you apologising to anyone? You have Lupus and you have decided the way you want to explain it - and that is fine. It is entirely up to you and you alone how you deal with the explanation. It is nobody else’s business.

Some people are professional at being offended, ignore them and say what you want! There is a lot of ignorance out there about Lupus but then again there is also a lot of ignorance about other illnesses, even vaccinations. People either understand or they don’t and we have a enough to deal with without having to defend our illness, especially to other Lupus sufferer’s who seem to think we should all be Lupus warriors as well. Ignore them! Hope you are keeping well.

[MrsMarigold in reply to debsgm]

Hi debsgem. The Op got more than 10 likes for this post. I think reason is that most of us as chronically ill people are almost never believed to be actually ill, the rash on our faces resembles something “other” acneEczema etc…., the timeline of embarrassment and shamefulness in many cultures still exists. Especially in this world of perfection of face and body. I related to her post because in my personal world more friends I had to let go as they were convinced I would be okay on this or that supplement and actually had one very close friend say derogatorily “lupus!” “What is that anyway? Just made up like fibromyalgia!” So common. So real. So even valid explanations just don’t work. If they do in your world, you are very fortunate. I agree with you about the past wolf explanations that are archaic but make for some interesting mythology. But my take even on that is children love stories. Stories can make it more bearable.

[Suvi8901 in reply to debsgm]

Most here will agree that it’s hard to get a proper lupus diagnosis and usually takes 6/7 years with many visits to docs. There’s so much ignorance and lack of understanding amongst so many young and old. Hence the science, good practice in lupus and up to date research must be continually cited otherwise the ignorant get worse!There are some excellent pamphlets here on lupus blood tests, other AI diseases etc.

I personally will always explain the science of lupus to any child first rather than use fairytales, myths and legends which could promote / reinforce further misunderstandings?🤷🏻‍♂️🤷🤷🏽‍♀️ confusion?

[Suvi8901]

Most here will agree that it’s hard to get a proper lupus diagnosis and usually takes 6/7 years with many visits to docs. There’s so much ignorance and lack of understanding amongst so many young and old. Hence the science, good practice in lupus and up to date research must be continually cited otherwise the ignorant get worse!There are some excellent pamphlets here on lupus blood tests, other AI diseases etc.

I personally will always explain the science of lupus to any child first rather than use fairytales, myths and legends which could promote / reinforce further misunderstandings?🤷🏻‍♂️🤷🤷🏽‍♀️ confusion?