Children's Reactions to Lupus

Children are pretty innocent and honest. They openly express themselves without realizing if it's going to offend someone or not. Those are some of the things I faced with having discoid lupus.

Kids who saw me in public used to bring pain to my eyes because they didn’t understand and did not have enough knowledge to know what I was going through. They just looked at me like I was contagious or disgusting. Some parents did not even try to question me and ask me what is going on. It was very different with certain adults and kids, though. I had two public experiences with kids and it opened my eyes to a whole new person. I started to love myself because I did not know other people could see me for me other than myself.

Reactions I have witnessed

My first reaction was a little girl in Walmart and she was crying her eyes out because I was in a full flare-up. She pulled at her mom asked her mom if I was dying and she just wouldn’t stop crying. She told her mom she did not want me to die. Her mom randomly walked up to me and asked me to reassure her daughter that I was not going to die.

And that was when I finally took a look at the little girl and told her that I would be just fine. I told her that I was not going to die and I thanked her for making sure and having emotional feelings for me. This was my first time ever going in public during a flare-up, because my husband made me, and I got approached the first time by the purest soul. It touched my heart.

Reactions at a lupus event

I then got healthier but still had discoid lupus and attended a lupus event. By this time, my confidence had built up and I decided to do this event. It was a chance for me to meet people like me. At this event, I decided to go to the restroom by myself. While coming out of one of the stalls, I ran into a little girl who just was completely honest with me. She looked at me and told me that I looked dirty and her mom told her not to tell me that. By that time I looked at her skin and told her, “You see those red spots you have one you? That’s what I have on me but it gets darker sometimes after they heal.” I was not offended or hurt because, by that time, I built up enough courage to know how to respond. I realized she was just a child. Her mom was surprised and happy I responded the way that I did.

Some people have good intentions

It's important for people to realize that sometimes kids do not know better and they are just being honest in an innocent way. They don’t mean to hurt anyone, they are just very interested in things they don’t know anything about. This made me build up more courage to want to start educating and reaching out to others to see and experience what they went through, and to educate those who are uneducated.

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