Explaining Lupus to Just About Anyone

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edited January 2015 in Awareness

Lupus article: Explaining Lupus to Just About AnyoneExplaining Lupus to Just About Anyone

Brandy shares her thoughts on clearly explaining lupus to extended and immediate family, friends, colleagues, children, and in social situations.

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Comments

  • My daughter has lupus and I am trying to be as supportive as possible. She has 3 young daughters works full time. I thank God for her husband. He is wonderful
  • Thank you Brandy for writing this. I also have had the same problems. I was diagnosed in 1998. That was the year I turned forty. I was in good shape but was so tired I could not get out of bed so I went to the Doctor and we started ruling out things. Also found out I had hypothyroidism. As the years progressed of course the disease did also. Fibro came into the picture. Weight gain due to inactivity you name it. Then lupus nephritis. Steroids and more weight gain until I could not stand the steroids any longer. At present I have neuropathy in my legs. I can't walk for long distances and I have to use a wheelchair. I also got a handicapped tag and like you people look at me like why do you need that....I'm like you I know people are worse off than me but I do have a disability. I also am on disability. I live in Alabama and lupus of course is considered a death sentence because I was told I would never have to send anymore information or be checked out every so often. So yes we are DISABLED!
  • @connie Hi Connie. I'm happy you enjoyed the article I wrote. You and I have similar issues - hypothyroid, nephritis, and neuropathy. I also have pleurisy, hence the oxygen tank. It can be a challenge when dealing with the curiosity of others, but I have leaned to never feel intimidated! Stay positive and stay strong! ~ Hugs to you!
  • You have taken your situation and turned it into such a positive experience. I remember working with you when you taught and I was inspired by the devotion you showed your students. I see you are still inspiring others!!!!
  • @sjmkramas Awe! Thanks Sally!! You have always been an inspiration to me as well! :) Miss you tons!!
  • My granddaughter has been diagnosed with lupus at the age of 15 how do we explain this to her she is very athletic but now find some days she's not up to her game how do we explain this to her team mates? Softball,basketball,track she has been amazing on her good days she out do many of her team mate but, we need information on how to help her adjust!
  • @sharonleverette I'm so sorry to hear that your granddaughter has been diagnosed with lupus. Personally, I think the best thing is to take it one day at a time. Because there is no absolute course that lupus takes, perhaps dealing with symptoms and complications as they arise will work for your family. Above all else, celebrate the good days!
  • RootzRootz Member
    I'm often met with, "Isn't that a woman's disease?"
  • I am struggling daily with lupus. I am in a terrible flare right now. Thank you writing this. My family tries to be understanding, but I don't think they grasp the whole idea. I need to try harder to get them to understand you have helped me immensely. Thank you.

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