Books to really express to the masses about how lupus makes you feel

Books to really express to the masses about how lupus makes you feel

I've recently come across a book called "If you have to wear an ugly dress, learn to accessorize." If anyone has recently been diagnosed (or even if you haven't), it's THE most fantastic book. It is written by two women, medical professionals, both of whom happen to have auto-immune disease. One has Scleroderma and the other has Lupus. It is so hard for lupus sufferers to make people, whether it be family, partners, employers or even friends understand just how much Lupus affects our lives, but this book just sums it up so elegantly and just "hits the nail right on the head." It doesn't do it in a sad, depressing sort of way, and doesn't make the reader think "oh those poor patients," as for some people, including myself, the last thing I want is to be patronized by healthy people. It just lays it out, in simple english terminology, the struggles that we go through every single day. I know many lupus sufferers who express that fatigue is the one of the worst side-effects of having lupus, and sometimes, trying to explain to people that no matter what we do, we just CANNOT muster the energy to get out of bed, is really frustrating and feels as if we aren't getting through to people we're talking to. For example, my grandfather said to me today, go and have a sleep, that'll be the best thing for you. You'll wake up feeling much better and refreshed. But that's the thing. We sleep, yes, and we most certainly NEED the sleep, but we don't wake up feeling refreshed, or ready to take on the day like many other healthy people do. This is what this book puts so fantastically into words. I've tried for years to make my employers and friends understand, why, at times, I just cannot come to work or to the cinema (for which I've lost jobs and friends) because I'm "tired." It sounds, to the average person, like the most ridiculous and feeble excuse. But after giving this book to my mother, she has discovered a new way of thinking with regards to this illness. She has understood how we feel on a daily basis. If any of you feel lost in translation when trying to verbalize how you feel on a daily basis to friends and family, I really do recommend this book. It's absolutely FANTASTIC.

10 Replies

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  • Sounds brilliant! Think I will be purchasing that :-) xx

  • This sounds good....I will get it too. My family apart from my son (who is waiting for a diagnosis) do not understand. I get similar comments as you got from your grandfather. My mother has told relatives I suffer with a few aches and pains and it is non of their business to know. She will not use the word lupus. I have fibromyalgia too. I will leave the book you mention for all to see!! Keep well x

  • Thanks for the recommendation, and I too will purchase this book.

  • On my computer to amazon right now thank you so much for the recommendation

  • just ordered it from Amazon kindle edition is cheaper but I ordered the book as I want to share it with family and friends so they can maybe understand how we feel each day, I often meet people who ask how I am then before I ahve time to answer they say " you look well "

  • think i might give this a read .

    How are your getting on not heard from you for a while

    Love & Sunshine

    Jan

  • Thanks Karly - sounds brill!

  • Thanks Kary, I've just ordered it from Amazon

  • YEA I GOIN TO GET THIS ...I WAS JUS SAYIN OH MY HOW MUCH EVERYTHING YOU WROTE ABOVE SOUNDS JUS AS IF I WROTE IT SO TRUE

  • Bought this online and got it on Tuesday, can't put it down. I have Lupus and Sjogrens and this book exactly describes how I feel. Maybe I should give to a work colleague who hadn't realised that during my return to work on a phased basis that the 25 mile drive to work in the morning followed by a 45 mile drive north again to a hospital appointment to then finally drive another 25 miles home would be "onerous"!

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