Mbaer, your feelings of frustration I really get. I have a fibro diagnosis and host of other things going on besides the lupus. Your friend needs to educate themselves about your disease. It strikes different people differently, and we all know what happens when it kicks into high gear. As much as I dislike saying it, often others will have no understanding of chronic illness unless they come to a point of dealing with it personally. Life tends to teach us what we are lacking.
That said, if someone makes you feel bad about yourself, or is negative, perhaps a bit of distance from them for even a short time might help? I'm not saying to isolate yourself, just give them time so they can miss what is wonderful about you. I did it with one friend, and our bond grew stronger. We don't discuss my health. Instead we focus on sharing what is good in our lives, and where we are heading, what is getting accomplished. I was guilty of letting illness be the all of who I was.
Here you can be open, honest, and voice what others can't handle, we all get it and understand because of our own experiences. hugs.
I am trying to figure out why my son is pulling away from me when we have been so close all his life. I am wondering if he can't handle my diseases and is worried about what will happen later. I can't get him to talk about the issues. I think he is scared and if he doesn't talk about it then it is not real and I won't get sicker. I wish he would talk to me about it. I even sent him this forum, but when I asked him if he checked it out he says he is too busy. I have come to the conclusion I will take whatever relationship I can with him for as long as I can. It is better than no relationship at all. I only received my actual diagnosis a few months ago after my first issues with the disease last winter (even though the doctors think I have had it for years, but never had a diagnosis). Maybe after the shock (or whatever) wears off, he will come around. I want to still be there if he does. I also do not want to lose whatever time I can spend with my 2 grandchildren.
This is a wonderful discussion for me. I am very newly diagnosed, and have been “pretending” everything was fine for years. I guess I just didnt want to accept the possibility that something could be wrong. My symptoms and pain became too much to pretend anymore. People tend to notice when you’re walking slow as a snail, and can barely get out of a chair.
I am really struggling about what to say to my family, friends and co workers who just dont seem to understand, care or compare me to someone else who has lupus or some other disease. I feel soooo alone and so lonley all of the sudden.
Also, can someone please explain the reference about " spoons" to me?
This is the hardest part. People not believing or understanding the pain because they can’t see it. Sometimes I feel like I just want to jump. I struggle with what others think. Especially family
He's probably scared to find out what the disease entails. A lot of people hear Lupus & think no cure & death sentence. Give him time to digest the diagnosis it's only been a month. I've had Lupus for 22 yrs & my husband still won't talk about the disease. My 24 y/o son did some research so he knows the symptoms & side effects of medications like steroids, I gained 100 lbs which was shocking, I always weighed around 120 Lbs. Lupus is not a death sentence, you can live a full life if there is no major organ involvement. Even if there was there are options for treatments, Be patient & tell him you'll be there when he's ready to talk
I am experiencing something like this as well with some co workers. Since I am newly diagnosed less than a year ago I have been trying to be patient with others. I know it is hard but I just figure it’s because we look healthy on the outside people do not know what we are feeling on the inside.
If she is willing, have her visit this site. We ALL have different levels and symptoms of our disease. My mother told me when we went to visit over the 4th that she read that Lupus pts. should walk a mile a day.
I live in Las Vegas with temps over 100 this time of year even if I could walk that distance. Duh! I told her that not every person with lupus has the same level of energy or reaction to sunshine, heat or exercise. Sometimes they just need reminding that much like cancer, diabetes, and other diseases you cannot possibly compare one person with a disease with another. 2 people can have lung cancer, one can be near death yet the other appears to be just fine.