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I went camping this last weekend and I was not having good days but there were times if I took enough Naproxen I felt pretty good. The pain is mostly in my legs. Anyway the group wanted to go through a bunch of Antique shops. I said I might not go and my friend says, “Have you ever heard the saying, what you don’t use you’ll lose”? I didn’t know what to say. I was hurt but I went. That night I was in a lot pain in
my legs. I layed there and cried. Why would she say something like that? My… read more
Diane, that is a very insensitive friend. As difficult as it is, I've learned over nearly 40 years with the wolf to ignore what others say and do what's best for me. Overdoing it puts all of us at risk of flares, and only we live with the consequences.
I find that true friends make an effort to understand our disease and are considerate. Those who lack the interest or patience are not worth keeping, I have found.😘
@ Diane
I had a similar thing last week.
Of all people it was my sister who knows what I suffer.
She has been working on her health (she doesn’t have anything seriously wrong) which is great. But she thinks now everything she’s done I should do. Like walking 5 miles climbing mountains and going away with her about 200 miles overnight. And should eat what she eats. I already eat a healthy diet much the same as hers. But she didn’t just say it she rammed the words down my throat. I kept calm and just said there is no comparison between having a chronic illness to not having one.
When she left it triggered me.
I went into a flare which I’m still trying to nail. I know what you mean by not being able to get it out of your head. I still can’t either and it was a week ago.
I just wish sometimes that 2 of us lupies were together when things like this happen. Then they would get 2 to explain what happens. Or at least advocate for the one getting picked on. Unfortunately it’s not hardly ever the case.
I guess we will just have to wait till these hurt feelings pass Diane. Just know I’m with you on this one.🥰💜🩷💜🩷💜
I'm so sorry your friend said that...it's very hurtful when we get comments like that and then we feel pressured to do things our Friends want us to. But actually, it's just plain selfish of our friends to pressure us to do more than we're able! We're the ones that have to deal with the consequences afterwards. Something that helps me a lot is setting firm ,clear boundaries with people, telling them their comments hurt and explaining my limitations ,kindly asking them to please treat us with respect and care. There's no guarantee that they will treat us kindly but at least they know we can stand up for ourselves. I pray that God will give you strength and courage!
It can be really challenging when friends don't understand the ups and downs of living with lupus. Here are some strategies to handle such situations:
1. Educate Them: Explain that lupus symptoms can vary greatly from day to day. Share that while you may look fine, you can still be in significant pain or fatigue
2. Set Show Full Answer
I hate when people say dumb things. She needs to be educated about how bad lupus is. I have understanding friends, but I did have to explain to them what lupus does to us. Just let them know the good the bad and the ugly
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