I’m a naturally cheerful human so I was hoping it was just ignorance on the part of the people who said I was being a hypochondriac/faking (even those who saw the devastation being wrought over the last several years firsthand). I’ve been accused of having some sort of mental problem, ‘imagining things’, and treated to the utmost disrespect even by family members. It is not an illness I would volunteer for-as an artist the loss of mobility makes it quite difficult to participate in expos and gallery events, travel is restricted, and the unfortunate aspect of being rendered allergic to 98% of the medications that could help with the symptoms is holding me back. There is nothing more frustrating than having people view me as ‘sick out of convenience’, while suffering from a most inconvenient disease.
People will always see you as they choose to, which can be wholly separated from fact and logic. Your job here is to educate those who can be educated and ignore those who are willfully ignorant. You will not miss their smug judgement of your conditions- if they treat you with disrespect, let them have their opinion and stay the hell away from them so that their ignorance does no further damage to you in the form of stress.

i go through the same thing with one of my daughter's and friends that i have. just recently i lost my train of thought and i also could not remember a portion of his SS# and they both made a comment like i was going crazy or that I needed to get it together. I replied by saying if they would research and read about the disease then would know that particular symptom is from lupus. it is so hurtful and annoying when people tell me if I wasn't sleeping all the time then maybe my joints wouldn't hurt or I need to exercise but yet my feet are crippled and I cant walk or stand more than 10 minutes or when I'm told if I change the way I think and stop the meds I will be fine. I have also heard that its the meds that are making me sick, I totally get what your saying and know how u feel. you are not alone

Reading through this blog makes me realize how ignorant people are of this disease. No amount of rest will take away the fatigue. Eating right may make you feel better but chances are it may not. You can’t will away, ignore away, or sleep away Lupus. Someday it may be cured, please God, but right now there is more they don’t know about this disease than they do. If you have someone in your family with Lupus love them by not questioning how they are struggling based on the way they look. That is the cruelty of this disease. You may never look sick and yet be very sick. Don’t try to give them remedies of diet, herbs, oils, or other fly by night cures. The best thing you can do is be there for them, support them when they’re not feeling well, offer to help them and don’t question the degree of their fatigue because you cannot see the fatigue of lupus. Plain and simple. Lastly do not lecture them. You may think you are helping them by giving them advice but most the time you are not!

It's almost like I should look sick and not wear makeup or do my hair. They don't understand that I may look ok but I don't feel ok.

I’m still struggling immensely with that. It’s devastating to be diagnosed with Lupus and all the emotions that come with acceptance and learning how to better manage yourself and your mental health. It felt like a really brutal blow when I found out there were several people questioning the validity of my diagnosis or worse, my honesty. I’ve been hospitalized for weeks at a time several times annually for nearly a decade and it was so frustrating for me that they knew that yet still doubt my word and the plethora of symptoms I’ve struggled and endured daily without their support or acknowledgement. It hurts a lot but I try hard to redirect my focus onto my loved ones who support me and have been compassionate and I’m grateful to have them. I thought I was alone in the doubt department and while it’s a shame anyone is not given the validation or compassion they deserve when diagnosed with chronic autoimmune diseases, it’s a reflection on those who are choosing to be ignorant and self centered. Love yourself and your circle of supportive family and friends and try not to let the negativity get you down.