The Stigma of Explaining Lupus to Others
Last updated: October 2021
The stigma of explaining lupus to others can be overwhelming sometimes because they don’t know what you go through daily. I have some people that call me most of the time just to understand how lupus works and how to understand the condition.
What people have asked me about lupus
When approaching someone who does not understand your condition and is already hostile, most of the time they are not even listening to what you are saying until they calm down. I just recently had an experience where someone I know spoke about health insurance and their disabled child and I compared their child to me. Well, just because my disability was not visible in their eyes they believed I had no disability. It took me all about 30 minutes to explain to them my condition and why it was as serious and considered a disability. In the end, all they could ask me was, "so you have cancer?"
How I react to questions about lupus
I gave them a shocked look and just replied, "not really." In their eyes, they thought lupus was a death sentence and I told them that they needed to look at the bigger picture. Some people misinterpret lupus for just being a skin disease and it is not that either. What I do love is people that are just diagnosed with lupus and they ask questions. I usually tell them that everyone's lupus is different and sometimes they feel that you just might not want to tell them how you stay healthy and in good standing – and that’s not it either. Lupus is such a complicated disease to where they are still doing research on the topic still today.
There was another time where I was on vacation and someone kept starring at me and I starred back. The person finally spoke and said exactly what I thought they were going to say. The most common 5 words a lupus patient hears is, "What is wrong with your skin?" I always smile and say I am glad you asked instead of judging a book by its cover. It's not eczema or psoriasis, it's lupus. Then in return, it's always someone’s family has the disease and they are doing good. Then they usually say they saw the disease look like that before. I always say every disease is different. They are sometimes when people have family members with this disease and they are doing way better so when you tell your story, they might think that you're lying or making up excuses.
Remain positive through the stigma
The best thing to do is remain positive and answer the questions the best way you know possible. You cannot force someone to understand your condition even though you're stating the facts of your specific condition. Most people even doctors become surprised when you educated yourself so well on your condition to where you understand everything that they are saying. I always tell my doctor that it was because I wanted to know what is going on with my body, what will be done to my body, and so forth, while also understanding the medical terminology behind it.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?