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A MyLupusTeam Member asked a question 💭
Akron, OH

Hi Lupus family I wanted know how do y'all deal with family telling u u need to go out & have fun bt in all reality i want to do is sit in house & not do anything b cuz I feel like they really don't understand wat we go thru!!

November 29, 2020
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A MyLupusTeam Member

That is indeed a difficult thing to deal with. You're not already feeling crappy enough, and then the pressure to go be one of them, the healthy ones, who go out and enjoy themselves, starts mounting to burden you some more! For me it was a good friend who really meant well! He just wanted to see me be (act!) normal, and be at restaurants with everyone and not stay home! He was also afraid that I was becoming agoraphobic. That was all he knew about people who stay home, so my telling him that I am NOT AFRAID to go out, that I simply don't feel up to it, fell on deaf ears. He had never heard of that before, nor had he ever felt that bad before. For short periods, perhaps, but not a year! There was nothing I could do but stay home! I WANTED him to realize that it was the disease, and not my emotions, that was the cause, and I would gladly have given him satisfaction, if I could have -- and I would have enjoyed myself, if I could have.... but I couldn't. And that's all you can do -- listen to your body and do what it tells you, and to hell with everyone else! If you can't make them understand, you CAN make them live with the consequences of your illness. Don't forget to remind them that you didn't ASK FOR THIS!

November 30, 2020
A MyLupusTeam Member

I could see the disappointment in their face when I said no but I stayed home.

November 30, 2020
A MyLupusTeam Member

They still tell me that and i’m 73 years old. They tell me how you are going to meet some one if you are always home. They just don’t understand. Just don’t lesson to them and live your life like you need to. You have me that understand how you are hurting inside. Keep strong with the power of God and know he is a loyal friend.
You rest in peace and dream with the angels. That’s what mom used to tell me. 🙏🌙 🌟

November 29, 2020
A MyLupusTeam Member

Thanks everyone for ur helpful info & advice I really appreciate it!! I'm glad I can talk 2 ppl who really understands!!!

December 1, 2020

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