So as if i am not already depressed enough about having to quit my job and not being able to figure out what to do with my life now..my sister tells me today that she thinks i am milking my illness...she feels i could have worked a 40 hour week and that i am milking my parents because i can, even though i pay all my own bills i just live here for free. now i feel like i cant talk to anyone when i feel sad or sick because they will think i'm faking it or blaming it all on my lupus...has anyone ever had this happen?? i didnt ask for this...i dont want to feel like a loser and sit at home and thats what my family acts like..but i also dont know what i can and cannot handle right now....i had a really bad flareup from working 40 hours in 4 days..she doesnt get it...=(
Sorry to hear that you are feeling down and just know many of us have experienced it with our families as well. Lupus is what I call the hidden disease and everyone talks about the "you don't look sick" aspect. Some people have referred their families to visit the site where it talks about the Spoon Theory, www.butyoudontlooksick.com/the_spoon_theory/ Maybe this will help you explain how you feel.
Just know and believe that GOD does not put more on us than we can handle and you may have to make some lifestyle changes but your life is not over. We're making it and so can you, you just have to go about it differently.
Here's a cyber hug to you and praying your spirit is or will be lifted.
It is really unfortunate when our own family does not understand our disease and how it affects us. It sounds as if your sister needs a little education about Lupus. Your big concern should be how your parents feel. Do they understand your Lupus? Are they educated about the disease, its symptoms, the overlap diseases that occur with Lupus, your medications and their side effects and the fact that Lupus changes and is replete with relapse/remission?
Talk to your parents, explain these things to them and ask them how do they feel about you living with them while trying to manage your disease? I would bet money that they, in no way feel like your sister! Giving your sister "The Spoon Theory" is a good start. Invite her to come to this site and read some of the member's posts so that she can understand what you are going through.
No one can tell you what you are and are not capable of doing with this disease! She has no idea if you can work a 40 hour week, she does not have your disease. Only you and your body know what you are able to do. Your sister needs to also learn how stress can aggravate the disease and if she is going to continue to be the cause of your stress, you will have to redefine your relationship with her.
I would also bet that, if she were in a similar situation, she'd be seeking help from your parents also and that you WOULD NOT begrudge her for that!
As long as your parents are understanding and supportive, you should try not to be too concerned about your sister's opinions, especially since they are all based in ignorance about this disease.
In any case, we are always here for you and we truly understand what you are going through. You can always come to us and we will always give you support!
Peace and Blessings
I have a sister and brother like that. At the moment I am not even talking to them. This can be a very lonely illness. We look pretty well. Others will say "Wow, I wish that I could stay in bed all the time" This is true, they would like to stay in bed, but not have any illness. At least, know that you are not alone.
Blessings to you,