Several people have asked about friends and family members of people with Lupus, how best to support someone with Lupus, and things that people should and shouldn’t say.
I’ve felt I couldn’t answer this for two reasons:
1) I think every person diagnosed with anything– Lupus or otherwise– experiences it both emotionally and physically in different ways. I can’t really give advice about what you should say and shouldn’t say, because it really has to be what each person needs.
2) I’ve never experienced it as a relative or friend, as I’m the patient!
So I took this to my parents. In the words of Mom and Dad:
“It has been a long and sometimes arduous experience. The trick has been to provide support and nurturance while not being overbearing or interfering with independence. That balance has changed from the beginning when we were all searching for a diagnosis and bewildered by Heather’s symptoms, to now, when we know what the problem is and Heather is also 15 years older. The painful personal part for parents is understanding that your child has this condition for the rest of her life, and you can’t change it or fix it. Our advice to parents who had a child diagnosed with Lupus would be: learn as much as you can, and at some point you have take time for yourself and buoy your own inner resources or you will be useless to your child. We live in the hope that strides will be made in the future to change the outcome.”
And specially from Mom: “Everyone should support stem cell research or this disease will never be conquered. Vote Democrat.”
😉
Keep asking questions, please! I have 5 more slots without planned posts, and there’s no such thing as a stupid question.
Honestly, this post really speaks for itself. Are you supporting someone with a chronic illness or a disability? What sort of things would you add?
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 