The Stigma of Explaining Lupus to Others
Last updated: August 2022
The stigma of explaining lupus to others can be very hard. Why? Because lupus is considered not a serious condition. Most people think lupus affects your skin. I feel like we should normalize people not comparing others' conditions. I have heard other people tell others, "well, my family member has it, and it is not that serious for her." Sometimes it's better to understand the disease before judging someone else about their condition. Someone recently met me in Walmart and asked me about my health condition. They wondered why my skin and hair were the way it was and would not grow. I told them I had lupus, and then they said they did as well, but their condition was not as bad as mine. Their lupus only affected their skin.
Bullied because of lupus
I have met so many people who experience negative altercations with others, which sometimes breaks our egos and personality. No one with lupus wants to be told hurtful things because we are already insecure as it is. Another time was when I was bullied because I did not want to accept a man's flirtatious gestures. He flirted with me, and I denied him because I was married, and he called me a bald-headed dalmatian and then continued to offend me. Sometimes others do not realize that we still know our worth with this condition. They hit me below the belt because I didn't want to talk to that person and attacked what they thought would affect me. If I did not know how to love myself, I would have been depressed because lupus will do that to you.
Building confidence with lupus
When dealing with lupus, you must learn to build that confidence within yourself. Remember you are the same person you were before and then some. I find myself getting more compliments with no makeup or wigs on. At a gas station, someone told me, "you know you're beautiful, right? I need you to know that. No hair and all." Another person at the gym saw I suffered from alopecia, and he told me to cut it down to the skin and rock it because I was gorgeous. You say things like that can make a person's day. Everybody's opinions can affect someone positively or negatively.
I also learned that it is up to me to educate someone. They always end up apologizing when they realize they talked about your severe condition. The ones who do not apologize affect them when they are no longer around you. Sometimes, as lupus patients, we must realize that those people may be going through something as well. They do not mean it sometimes; you were just there when they had that negative energy. I don't let it get me down, though. Sometimes I have to tell others not to ask for advice who do not have an education behind them because they are going off experience and everyone's lupus is not the same.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?