Im newly diagnosed and I have struggled a lot with joint pain and fatigue. Im also battling the slight weight gain associated with steroids. Sometimes I get frustrated because ppl say things that make u believe that they think ur just lazy or u must be doing something wrong that is causing u to feel so bad because they don’t understand the disease. I just get so tired of trying to explain the pain that im in every day. I don’t complain. I just deal with it the best I can but it can be very annoying having to answers like ive done something wrong.
Normals do not understand how chronic pain and medical illnesses can affect us. I haven't been diagnosed wit lupus yet, but I do suffer from chronic pain in my leg as a result of DVT. I have a lot of pain and mobility issues. Sometimes my family says that I'm not trying hard enough, or that I'm giving up too easily. All I did was walk through two super-markets for a total of thirty minutes on Tuesday - and my leg is still in pain today. It feels like I've ran the Boston marathon. My leg is sore, tight, and it feels like I have a sprained ankle. How can I just brush that off and get back to my normal daily activities? They just don't understand! I know I didn't understand two years ago. I most certainly understand now. You're not alone! We all have to deal with insensitive people. I just stopped trying to validate myself to them. I snap and tell people to back the f up off me now. I hope you can get your friends and family to back off for a while.
Tell them if they really want to understand, then read some of the threads on this website!
Love and hugs! WE understand.
I live that every day too.....why dont you get out of bed more? Look, I work full time and drive an hour each way to get there....why can't you understand that's about all i have in me? And would i KILL him to just do a load of laundry?
:( I completely understand what you are going through. Hugs from NY.
I hate that too, I gained some weight and my friends are like, wow u look so fat, go to the gym more, or something like that, and they know that I am in pain. Sometimes I feel people just enjoy making me feel bad, because I don't see any other reason to say stuff like that. I know I should not, but sometimes I really want them to feel as mush pain as I do and see how they will cope with that. And help us God
yes well carma to them then...my sister was always the skinny one, always would pick on me and make fun. I wasnt a bridesmaid in her wedding because my arms were too fat I was told. Well guess what now? She's gained about 100 lbs. So there. ha.
I can understand,what my wife goes through?
But my other family members don’t understand this. Our prayers are there for you. Hope you would get into remission soon.
Regards,
Karthik
LuLu, welcome to the group of us Lupi's...........unfortunately we have to deal with uneducated people. Go to the Lupus Foundation website and print off some info, and when people make comments, give them the printout...not only will they be surprised, but then learn what you are going through, everyday of your life. Good luck to you, and feel better.
being a part of this group has really helped a lot. I’m so glad to finally have a group of people who understand how I feel.it’s just really been hard dealing with the pain and then to have to deal with the inconsiderate and insensitive comments doesn’t make it any easier. Thanks for all your comments it makes me feel better… I know that I’m not alone my fellow lupies.
has anyone ignored treatment options because they were afraid of judgement? my foot has been so bad lately...just terrible and some mornings i couldnt barely walk. I went to work one day with a cane, it was really that bad..and my boss laughed at me...you arent really going to walk around with that thing are you? Well yeah its better than falling isnt it? I weigh 300 lbs, hows he going to help me up if I fall? He's not. I didnt bring it again and I won't .... its just the two of us in the office and he's very judgemental when i mention anything about being sick. whatever. i love the job but he can be a real jerk.
My rash flared bad when I was pregnant. My body had a hard time with the hcg horomone…anywho ppl would stare so bad and I got tired of explaing so I just made a shirt that said “allergic to my baby” with an arrow pointing to my belly…it stopped the stares and I got more congrats for my baby rather than the whats wrong with look. My rash is flaring a little so guess what…I went to walmart and got a plain t shirt and fabric markers. Now I have a shirt that says lupus survivor…now they can just pull out their smartphone and google that!!! Lol
I feel the same way and am sure everybody with Lupus goes thru it.I just tell my good friends to look it up on computer.It is not that easy to explain to one who,s first thought is that u might be lazy or making it up.Friends like that u don,t need.I too am new at this and feel a lot like you.but am getting better as my signifgant people educated themselves.Good days are ahead and be good to youself. Carol