Family don't get how serious lupus is

[Sallmell]

Anyone else struggle with this. Because I look ok they expect the same of me

[Hidden]

Hello,

There are many excellent leaflets, books etc published by LUPUS UK for sufferers, family and friends here.

There is one which details the many symptoms, signs, complications, tests, terminology etc for the various types eg DLE, SLE, Sjögren’s etc...

There is tooooooooooo much ignorance😢😱

Regards

[Hidden]

Hi Sal, I'm really sorry to hear about this, I understand your justified frustration. I believe it is very common but that doesn't make it right.

I also have the same problem, my wife has had lupus 15 years now and still her family refuse to believe she is allergic to sun light and find it hard to understand the complications of fatigue. I gave up fighting to explaining to them many years ago, but at that time I found myself questioning my own knowledge and doubting myself because I wasn't able to make people understand. There are some well recommended reading material from lupus UK if you ever need any solid advice or guidance and I'm sure the members board here will support you.

What I eventually learned was keep your energy for yourself or the person your looking after and don't use it up worrying about what other people think or trying to convince them.

Regards,

[Sallmell in reply to Hidden]

Thank you for this my husband is amazing but my children don't get it and refuse to read about it

They dont want to accept it x

[Hidden in reply to Sallmell]

Hello Sallmell,

I’ve read here of some truly exceptional children of lupus sufferers.👏.

Heartwarming stories include:

Eg a male lupus patient tells of his 11y old son reminding him to take care in the sun!

A grandmother with two young granddaughters helping her out whenever she has a “flare” 👏

Who says wisdom is not found in kids🤔?

Ignorance breeds fear breeds prejudice breeds antagonism!

Hence the need for constant education and re-education particularly to those who should and must know. The internet is a huge resource.

Keep well and 😊!

Regards

[Sallmell in reply to Hidden]

Thank you x

[Krazykat26]

I used the spoon theory to explain things to my family n friends..it says it all!! If u Google spoon theory u should get it..have a look n see if it will help..my daughter's found it explained things in a way they can understand n now I don't have to say I'm unwell..I just say I'm low on spoons today n they understand..usually!! Xx

[Sallmell in reply to Krazykat26]

Thanks for this I will be sure to look. X

[Crazy_Cat_Woman]

I emailed my close family a copy of a letter to family and friends I found on the internet:

lupus-and-me.blogspot.com/2...

Some of them found it very helpful....they just couldn’t understand why I would be OK one minute and in my bed the next!

My dad is still in the mindset of “you just need to lose some weight and get some sun and exercise”. I have given up trying to explain my situation to him. It helps me to remember that my illness really upsets him and he just doesn’t know how to deal with it himself. It doesn’t mean he loves me any less.

Kids can be funny at times. They probably do understand but don’t want it to be true.

The most important thing is to love yourself! It’s OK to be unwell and it’s good to be selfish sometimes.

Big hugs x

[Sallmell in reply to Crazy_Cat_Woman]

Thanks so much for this. Best wishes to you x