I do find the lack of understanding to be a little tiresome at times. I don't expect encyclopedic knowledge, but people need to realize that not everyone with the same disease is going to have the same experience with it. I don't like to constantly mention having a chronic illness to people, but when I have to pause to rest, or make an accommodation for my illness, having to explain why all the time sucks, especially when people already know I have Lupus. I don't expect others to accomodate me, but being questioned gets annoying.

Yes very annoying when people group us all in the same reaction to lupus.
I think it’s total ignorance about the condition.
They need to research it more before they comment.
But of course they wouldn’t do that because it’s too hard.
I have to say it’s getting very old the comments I get from some. It’s also not always easy to shrug them off every time . So frustrating.
Then we are left with yet another challenge of picking ourselves up again afterwards.😼

...but you were out yesterday why are you so tired now

Ugh…did it to me again…I’ll have a longish text in response to other people and I hit a wrong key and there it goes. Can’t ever find it so I just think I can’t retype that all again. 🙈 😆 so…all I can say right now is Thank you very much!

I have no one to talk to. One friend always has my symptoms til I tell her this is lupus related and she doesn’t have lupus. And a sister I’ve tried talking to says “stop taking all that poison you take and you’d get better!” She’s talking about my prescription meds. Or she says “if I had your quality of life I’d rather be dead!” And my daughter walked out on me close to 20 yrs ago because she said “I want more out of life than a sick mother with no hair!” And “I’m not taking care of you and don’t want anybody calling me when you’re dying or dead because I’m not coming!’ Everybody else I had passed away yrs ago! The only way I have survived this and other problems is I’ve had God and Jesus helping me, I was very sick 20 yrs ago when my daughter did what she did. But I still worked. I didn’t quit working til about 6-7 yrs ago. But since I’m not working I have qualified for home care and have a terrific caregiver that loves me more than anyone living. She’s terrific. And just in 6 mos can take one look at me and tell if I’m sick, depressed and what illness is attacking me that day. I have a bunch of immunity disorders and collagenous colitis and none of what I have is curable. I actually have 6 specialists and trying not to go to another one…I bounce from depressed and relieved God made a way for me to quit work plus give me my caregiver. Kim (my caregiver) walks in and everything gets better. She keeps me laughing. She loves my 19 yr old dog. And he bounces from congestive heart problems to his old bouncy self. He’s an amazing dog. And anyone can talk to him and have a full conversation with him because his expressive face just leads you along. He snorts for “no” and you can see “yes” in his eyes. And from time to time he tries to talk. He’s done that for yrs but doesn’t try as much now. But when Kim comes in he says “mal ma grumble grimble…and Kim knows he’s mad at me. 😂 He s like an old man and now wants to be his own boss and gets mad when I tell him he’s not boss. I’ve got an amazing cat too. People in the city loves to come and talk to me pets. And you can communicate with them easy. They became my kids. And I’ve talked to them so much they know exactly what I’m saying. Once I was trying to work in the flower beds. I had a half of glass of tea left. And was saving it because that was all I had left til I made more. A couple people stopped by and I just tossed garden tools in the door and sat my tea on the floor too. I always use glasses with a top and straw. We were talking and heard “sip sippy” noises behind us and looked behind us and my dog drank ALL my tea through a straw
Then kicked the cup away when he was done. 😂 sorry didn’t mean to get that deep into my life good and bad. I’m starting to shake and tremble gonna take my “poison” and lay down. Y’all hang tough! 😊