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Life With Lupus

Recently Joined

#1

Good day,

Can someone help me understand LUPUS better? How do you deal with this kind of disease especially if you have just been diagnosed? I have a relative who recently found out she’s been diagnosed and hasn’t taken it well. I want to help her get through with this.

#2

This is so considerate of you to want to know how to understand! Joining a support group was the most helpful for me, perhaps you can offer support to your relative in this way?

#3

Longer than I meant.
Like most autoimmune diseases lupus is different in everyone. Which is both good and bad. Hopefully she has the softest gentlest forms.
Lupus is a lifetime disease. Wish it was something we could just cut out and be done.
If you look on line you will see that most have rash pain, sun sensitiveness but live long relatively health live well managed by doctor and meds. Listen to doctor take meds. Not all doctors are good if you are happy stay if not find a good doctor.
You may hear the term SLE. Systemic lupus erythematosus (SLE). It is where the bodies systems become effected. Some of the big ones are kidney (nephritis) central nervous system (cns) heart my sister had this, and lungs what I have.
It is easy to spiral down emotionally. If she crashes pick her up show her love and support.
Be careful of the… someone who has it worse than you…that can backfire. Yes they have it worse but I hurt I’m sick which can send some into a depression of guilt and shame. We are the center of our lives my family, my illness. Better to focus on how she is doing now. Also help her get out of self with children, pets, go outside, get coffee.
As a woman, and I am not, the butterfly rash can be devastating. Take her to a professional to learn how to apply makeup that hides and highlights the rash to her benefit so she is beautiful both inside and out.