A Word or 100 About Lupus & Family



Ok, Do I care what people say or think? YES!
Lupus SLE obviously affects my friends & family. I can’t make plans for lunch, or trips or babysitting, tennis, walks on the beach or pottery classes.
This, in some people, causes resentment I’ve learned. Resentment towards me. I “used” to feel horribly guilty, bad, sorry however I’ve recently realized that there are those who say, “hey! Don’t say that! Don’t be sorry, just know we can raincheck it for a better day. Don’t you dare feel bad” and then you have those who say, “well, I can’t depend on you or I can’t count on you. This causes me problems & I have to make different plans”. OK, I figure if you care about me enough to learn about lupus SLE, REALLY learn about it, then you’d understand I am unable, physically, NOT mentally, physically unable to commit to anything when my lupus is “active”
On the MendSo WHY would you say something that is hurtful? Because you either haven’t accepted & dealt with the reality that I DO INDEED have this disease or, you are resentful because I’m not the person I once was. Either way, personally I have to say it hurts my feelings (whaaaa again) and is unacceptable to say to me. 😡
I don’t hang onto anger, I just realize I can’t listen to these folks. Instead positive people who cut me slack. Because it was years of people pleasing that blocked my body’s ability to fight Lupus. Besides that nasty autoimmune system that has dyslexia.
Meaning…. my immune system attacks me.
See, I don’t look sick most times. Sometimes I’m able to suddenly DO SOMETHING! I hurry up & live all the life I can in that day, or hour. So, people might see me going somewhere or getting out of the house & take it personally. Why can she SO THAT but couldn’t go to lunch with me last week??!! Again, learn about SLE. You’ll understand why.
Be nice. I’m trying.


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