Do others presume your condition to be your fault?

I'm pretty lucky to have many friends and family members that are supportive...however there are always a couple who question my condition. When they start with their ignorant comments, I try to consider the source. I rarely see these people but when I do, I'm always biting my tongue. One is a phychologist and seems to think she is an expert on me.

She is an inlaw, and I only see her maybe once a year...so I guess i'm lucky.   Her cure for me...get to be more physically flexible, my system is not balanced.

Feel bad for those who have to put up with this type of thinking on a regular basis.

Hugs, Robin

I don't have people thinking that Lupus is my fault, but I do have some fols (friends included) that think I am not "really sick" because I "look good."  Sometime I wish those people could feel what my body feels like inside.

Laura

Robin,
I understand where you're coming from. I'm only 25 and people look at me and don't see how much pain I'm in. I laugh a lot of things off when inside I'm in tears just trying to walk. I work 12 hour shifts as an ICU nurse and have learned to hide my pain very well. Its always my favorite though when you get people that don't understand why you take so much medicine or why you need to take pain meds. My dad is not medically inclined whatsoever and I recently had (on top of all my joint pain and lupus related pain) severe abdominal pain. I was given morphine ER twice a day and he had a fit when he found out I was taking that. He actually asked me if I was really in that much pain that I needed that and told me I was going to get addicted. Pain is a terrible thing to deal with and people just don't understand unless they deal with it everyday. Luckily my husband is very supportive and understands but even then he has his days where I feel like he doesn't believe me sometimes. The thing is when people ask how I'm feeling, I get tired of saying not well all the time. I've just learned to deal I guess. I believe you. Its terrible and its definitely not fair. Hang in there :)

Hi Everyone. Years ago someone on the forum suggested we read the spoon theory and share it with anyone willing to listen. It is on this website: www.butyoudontlooksick.com It has come in handy sometimes to help folks understand. Also, this may sound odd, but I talk about my lupus to strangers every chance I get. At the grocery the cashier saw that I was buying pre-cooked east Indian food and he said it sounded good and easy. I replied, "I have lupus, so easy works well for me." He then sincerely wanted to know what lupus was, so I told him. I walking up some stairs holding up traffic and say, "I'm sorry, but I have lupus and can't walk any faster." I want to spread the word about lupus and I mention my lupus as often as I can squeeze it into a conversation. I feel people need to know.

Chronic illness is a disease that never ends. For me lupus has occasional days which are okay and lots of bad days. For me, severe fatigue, pain, and medications are part of every day. My weight watchers leader knows I was in a coma 2 months and was hospitalized three times last year with pneumonia, sepsis, and a partial bowel obstruction. Regardless, one day she said, "But you don't look sick." I laughed and said there is a lupus website with those exact words. www.butyoudontlooksick.com Everyone should read it. Love, Butterflake