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How do we cope?

Well I've taken advice from my ten year old nephew...

"It must be so hard living with lupus, don't you just want to cry all the time?"

Yes I do, but scared if I start I won't be able to stop

"Well I think you should have a good cry, cry a river and get over it, every day if it helps"

How can a ten year old understand that Lupus means having to get over it every day to carry on and thinks it's ok to allow yourself those tears every day...he's my inspiration and already he carries me more than anyone I know and with no effort, just by being himself.

I posted this because I'm so proud off him and know how lucky I am. My family love me and they have all suported me at some time, but none have taken the time to really dwell on how it feels to be me.

People do care and they try to understand, but as adults never seem to take themselves out of the equation;

My wife is in so much pain, it's really stressful (for me)

My daughter is so poorly, it's exhasting(for me)

We were supposed to go to a party, but I had to go on my own (poor me)

What those around us feel is real and justified, but sometimes, just sometimes I wish they would just shut uo and really think what it means to be me. I have my nephew and he makes it all better.

I hope everyone has someone in their life, even if you only see or speak to them once a year, someone who has really taken the time to understand you and your tears and realise that shedding those tears can help you carry on.

Love, hugs and boxes of tissues wished to you all.

Rosie xxx

8 Replies

thats lovely x


Thankyou Rosie... Your story truly helped me to not feel So bad because I cry so much.. I feel guilty for crying.. but it has Been very hard to control... But I am strong and will Never give up... By the way my middle name is Rose. After my grandmother Rose.. Thankyou again sweet Rosie... XO Melissa : )


Things will get better.Thank you for sharing your story,most people can relate to,it is so hard to get anyone who has not got Lupus to understand,this is why its such a lonely illness to have & Understand.

Love & Sunshine

Jan xx


love and kisses to you rosie and your post is so real x


A lovely story ...but in reverse for me.

My grandson was diagnosed last year at the age of 11...he has had so many treatments in the last year and has just come out of hospital as he has Shingles..He has all his meds that he has to take off by heart and sometimes has to correct his mum..

He has had to give up so much because of this awfull illness, his dancing his football so many things that a wee boy should be doing at his age ....

We are all as a family struggling to cope...but not our boy he takes it all in his stride we are so proud of him .

When he had to go back to hospital this week I said to him "oh this is so sad "his answer to me was ..."A MANS GOT TO DO WHAT A MANS GOT TO DO "WITH A BIG SMILE...

My hero

More Good day's to you all than bad day's.


You must be so much more than a happy grandma, lucky, blessed, proud....What a man he is!

Keeping you all in my thoughts and prayers

Rosie xxx


This thread is wonderful, it is so nice to hear about how people cope and who inspires them to carry on.

I have amazing friends and family. I am very lucky.

I will keep popping in here for inspiration.

Is there a way of keeping tabs on a thread?


I'm afraid at the moment it's not possible to subscribe to a particular thread.


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