I have several diseases and several back & neck problems. Not many people know that I'm sick , my immediate family (who don't really care or think it anything big ! A couple of my friends and some coworkers know. I think if you don't look sick then your "not sick" according to my family. I don't tell many people because I don't want them to feel pity . I wish that family was more supportive on what Lupus does to you at Any given Time . I joined this site for that very reason to talk to others going through the same thing and understanding . That is also why my Rheumatologist suggested a health counselor to help me over come the non caring family I have . My fiancé & his family are wonderful because they had a family member that had lupus and had passed away . So to all my LUPUS family all we need is each other!! God Bless you all and may you all have comfort & peace .

I have Lupus along with Sjogren's Syndrome, Fibromyalgia, Sleep Disorders, Osteoarthritis, Migraines, back pain, and so on and so on. When they find out I have Lupus, they just don't say anything and go on acting like I'm as well as they are. Or they act like it is nothing. And in the group I am with most of the time, they never ask how I feel or have I had a good or bad day. They just act like I'm normal like they are. My heart skips beats and at least one of them will say "Oh, mine does that". or "Oh my so and so has fibro or Lupus and she stays in the bed all the time like she thinks that is going to help", and more things like these. I come home and feel lonely. I don't want to have anyone to feel sorry for me, just to accept what is wrong with me and at least ask how I am doing from time to time. Lord help us all. He knows how we are feeling.

Most people don't understand and some think you can get rid of it by changing your diet and exercising. I shared the 28 Secrets of Lupus with those important to me or who needed to know what it is and how it affects me. The hardest part for many to understand is that one day I look and feel good and the next I'm down and in pain. I pray that God enlightens others and try not to get frustrated or angry with those people that are mean or ignorant.

GREAT DISCUSSION!

People generally fall under one of 4 categories for me: have I forgotten any?

1. YOU'RE DEAD ALREADY -
Think if lupus you are dying. "Oh, ___, I pray for you every day." Sorry... but find that very annoying.

2. Honestly academically curious.
"What exactly is that? Etc" Asks real questions in a non-judgmental manner, wanting to learn.
Usually offer to help with anything without real pity. They are realistic, not emotional.

3. YOUR A HYPOCHONDRIAC
these people have seen you go through years and years of doctor visits, some diagnosable, many not. Nothing showing up in ur bloodwork, ur exams, ur xrays, CAT scans, etc so "you must be fine". 5 years later a diagnosis, and no one believes you. "HOW DO THEY FIGURE YOU HAVE LUPUS"? Others think you are the little boy who cried wolf. You tell them: PUNCH BIOPSY or FINALLY the BLOOD WORK.

4. This last one I had to pay close attention to some people to figure out...
They DONT WANT YOUR SHITTY LIFE to INTERFERE w/ their GREAT life.
They dont want to hear anything about your med stuff at all. Even if you are ready to pass out. It will bring them down from their "cloud 9' lives. And typically their problems are so mild compared to ours... but they don't want to think about that since it makes them seem shallow. So they don't want to hear our complaints or stories... HARDLY EVER, if at all.

Help at all?