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How do you get people and family to understand about your illness when you have good and bad days and sometimes your up and doing things and don’t look sick then your tired not feeling well at any given time. I can’t exercise like I used to and I get told well try and exercise it will help. I have had people say to me
Well you were not to sick to go here or go there so need advice on how to explain or deal with this.
Good morning @A MyLupusTeam Member
I think my family and friends are in denial because I don't let this disease stop me from doing things I really wanna do. They feel because of the things I do I couldn't be in any kind of pain like I tell them. When I do try to explain, some don't believe me, others don't really listen and the others tell me stop using lupus. I even ask them to come to my dr visits with me, nothing. So now I don't explain anything. I try to keep my stress level at a bare minimum. I'm teaming up with you so we can learn from each other and travel this journey together. Have a great day lupus Warrior😘🙏🏽💪🏽💜💜💜
@A MyLupusTeam Member I haven’t told many people about my having lupus in general. I think I’m sometimes in denial too because I try so hard to just keep going lol My immediate family knows. My younger brother dated and took care of a girl with fibro so he gets it better than anyone (as much as you cab without having it), but we aren’t that close. My wife wants to know more and understand it better, but sometimes I worry she may think I blame too much on it. (A lot of things I do that annoy her are because of lupus, like forgetting a lot, but she doesn’t know that.) I’m trying to find that balance still.
Some of my family still doesn't get it even though they helped take care of my Mother who also had Lupus. They think that just because she died from COPD, all her symptoms stemmed from that, but it didn't. Most of them were from Lupus and its complications. The COPD was the proverbial straw that broke the camel's back.
My older sister finally came around when she started taking me to the hospital and watched me struggle with my IVIG infusions every 21 days. Before, she really didn't pay attention. I told her, but it didn't click until she saw me actually receive blood sometimes twice a month that this is real--can't fake that.
There is no easy answer. Some people are more stubborn than others. "There are none so blind as those who refuse to see." Can't fix that.
Have your wife do some research, maybe then she'll get an understanding! Maybe. Brain fog can be very frustrating also
My family and friends understands but then again they don't. They understand that there's days when I don't feel well and don't wanna do nothing but lie down but they don't really know how I feel. Because I use to exercise they think I still can. I always get " go do some walking" or don't always use lupus as an excuse. So to prevent me from being more stressed on having to explain all the time I don't talk about it. I know that's not helpful but I just feel they'll never really understand what you're going through. Only someone that's going through it can relate, that's why I love this site. My lupus sister and brother's are the best. Pray that you'll come to terms with it's hard to get someone to understand. Sometimes having a significant other will help but sometimes they don't even understand. I always tell family members research it or come to a dr visit with me. Hasn't been done. I've added you to the team, hope you don't mind. Looking forward to reading your story and chatting!! God Bless😘💪🏽🙏🏽☝🏾☝🏾💜💜💜💜
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