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What have you learned?

What is something you have learned on your lupus journey? What have you learned about yourself, about the community, or about lupus in general?

  1. You may be walking alone and actually I was abandon when I got sick everyone left me and support groups are my family and friends whom I use for help. My own mom actually thinks I made it up researched it to use it for an excuse convenient she said.

    1. people, even those closest to us, can be relentless in trying to make it seem like nothing is wrong. It’s hard to deal with that. I’m sorry you have to deal with that. Gentle hugs ~Racquel~ team member

    2. gentle hugs. There is no convincing people, including family, that you are sick when they are so bent on misunderstanding you. The way that makes a person feels can be like a ton of bricks. I’m so glad you have found support in groups and those who can understand what you are going through. I am so glad you are here ~Racquel ~ team member

  2. I have learned not everyone has the butterfly rash,Lupus affects everyone different,my Lupus is arthritis. My rheumatologist says I have Lupus Arthritis.🙋🏾‍♀️💜

    1. I don't have it I do have lupus erythematosu and Antiphospholipid syndrome which is my blood dissorder and caused me blood clots in 2016 in my lungs... Otherwise I do not know if we would have found I had it...

    2. yes the difference in how lupus affects us is so real. So many different ways that many won’t ever see as well. ~Racquel~ team member

  3. Take care of me first always.


    2. spot on!!!!! ~Racquel ~ team member

  4. To take advantage of good days.

    1. , So true, even the good moments in the day. There can be so many ups and downs in just one day alone! Thanks for chiming in
      Gabby (team member)

    2. so Important. Take advantage of them but don’t overdo it is my motto. Great point. ~Racquel~ team member

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