Explaining Lupus to Just About Anyone

Explaining Lupus to Children

My son was a teenager when I was diagnosed, so explaining my condition to him was not so difficult. He discovered it as I did, and although he initially worried about my mortality, he was able to grasp the conditions and limitations of my illness.

However, because I was also an elementary school teacher at the time, I found myself needing to explain lupus in simplistic terms to young children.

I wanted to ensure that they could understand, particularly because I would often miss days or require a germ protection mask during common illness seasons. I started with a variety of health lessons so that the children could understand the basics of illness, germs, protection, and how our body’s immune system is designed to work.

I have found that children are quite accepting of chronic illness — especially if they feel informed!

I generally explain it like this: Inside our bodies, we have a bunch of tiny superheroes; these superheroes are our immune system! When we get sick, our superheroes fight off the enemies, which are bad germs. When we take medicine, our superheroes get a boost of power and energy and they fight even harder!

“But because I have lupus, sometimes my superheroes get confused and they start fighting each other. This causes me to get sick and I have to spend time in bed or at the doctor. I take different kinds of medicine to help my superheroes get back on track. When my superheroes aren’t confused anymore, I feel better!


“Sometimes I wear a mask to help keep the bad germs away so that my superheroes won’t start fighting each other. This helps keep me healthy!”

The children are usually satisfied with this description and they seem to understand it. Certainly it can be tailored to fit your individual needs, but I have found that keeping it simple is best. There are also several books available that are designed specifically for explaining lupus to children.

Explaining Lupus in Social Situations

For the most part, I tend to avoid most social settings, as a large number of people can trigger an attack. Certainly, I participate in family and friend social gatherings, but I say no situations that include a large gathering of strangers that could potentially have a variety of ailments that I could be exposed to.

However, there are times that this cannot be avoided. Typically, I do not worry about it — but I have felt self-conscious because I use a disabled parking placard, carry oxygen wherever I go, have been confined to a wheelchair from time to time, and wear a mask when I have a high risk of infection.

I have found that the best way to deal with the stares and curiosity of strangers is to simply let it go! What they think is really of no concern to me.

I know that the people who matter in my life know what is going on. Yes, it can be difficult to ignore the possible criticism of strangers, but I am a firm believer in choosing your battles, and this is one I choose not to engage in.

This may not work for everyone, but it works for me! If I’m really uncomfortable, I will wear a “Lupus Warrior” t-shirt, purple awareness ribbon, or something similar to give an outward explanation without having to explain myself.

Explaining lupus can be a challenging situation; however, it can be managed. Equip yourself with knowledge and a process to explain your condition in any situation. Furthermore, don’t let judgment get you down! The next time you hear, “But you don’t look sick,” simply smile and say, “Thank you!”

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Explaining Lupus to Kids

Explaining Lupus to Kids

Explaining lupus to kids is important in keeping the fear at bay. Illness can scare kids and even tear a family apart — read Barbara's tips for coping.
by Barbara Leech on June 17, 2014
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