Sharing the Journey: Explaining Lupus to Others

The Sharing the Journey series is by people like you and for you. In their own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What tips do you have for explaining how lupus affects your everyday life?

Living with lupus is not always easy. When explaining what lupus is to people, I usually say it’s an autoimmune disease that affected my kidneys – Kyra

I have to say that this is one of the hardest parts of having lupus. Most people have heard of it but have no clue what it is. If I am to be very honest, a lot of the time, I don’t explain it to people. My close friends and coworkers are aware, but even they don’t have a full grasp on the disease unless they’ve done their own research. The easiest way to explain it is to first talk about what an autoimmune disease is. Then I like to tell them the symptoms that I personally suffer from, and that not everyone with the disease is the same. I also think it’s important to remind people that just because I look okay doesn’t always mean I feel okay. Some days are really good, and some are really bad. I think the people who mean the most to you and are supportive of you are the ones who really need to know what you are going through. – Justin 

I deal with this a lot at college. I had a lupus health scare 2 weeks ago, and I had to tell a lot of people about my disease because of all the things I missed while I was gone. I normally begin by telling people (in very basic terms) what the disease is: Lupus is a disease in which your immune system thinks your body is a virus and starts attacking your body and organs. Then I progress into telling them some of my more relatable and understandable symptoms: fatigue, swelling of joints, mouth sores, burning sensation all over my body, etc...  If they seem satisfied, I leave it there. If they seem interested, I'll tell them more of my odd symptoms: visual disturbances and skin rashes. I usually follow this progression and only continue to the next step if the person seems genuinely interested. A lot of people just try to be polite when they ask you about your disease, and it's easier just to stop after the scientific explanation. All in all, the more people I talk to about my disease, the more concise and articulate I have become in describing it. – Becca 

Lupus affects my everyday life in various ways, including daily pain, stiffness, and fatigue. Lupus requires me to be extra cautious about the weather and temperature, both indoors and outdoors, so I know what level of pain to expect, or whether I will likely have Raynaud's activity. I recently had a flare that left me in bed feeling like there was no way I could get up. Saying I felt like I had been hit by a truck doesn't begin to explain how badly I felt. The next day, I was back in school, dressed nicely, with my makeup done and no one knew it even happened. Lupus is not less serious because I attempt to make it look easy. Lupus does not just go away. And just because you cannot see lupus, or my symptoms from it, does not mean it isn't real. – Kayla B.

I could give a full description of what lupus is and how it affects just about every part of your body, but many people won’t care or still won’t understand. So, I just tell them to imagine having the flu every day of your life. And also waking up every day with the uncertainty of not knowing whether or not you’ll be able to make it through your day without fatigue, joint pain, digestive issues, headaches, etc. – Amber 

Lupus is more than a butterfly rash. It's a disease that impacts the entire body. Many mornings, I wake up feeling like I've been hit by a truck. I understand why people who don't have lupus don't understand it, because even I, someone who has lupus, don't always understand it, either. It's totally unpredictable. – Leslie 

Talking about lupus with the people in your life

If you have lupus, knowing how to explain lupus to others is an important skill. But how do you decide which people to tell? And how much do you share?

Think about the people in your life. Then think about what you feel comfortable discussing with them. These are personal choices, and there are no right or wrong answers. You might want to talk through your decisions with someone you trust.

Remember, many people don’t know much about lupus, or they might have misconceptions about it. So, you could start by explaining what lupus isn’t: It’s not contagious, not related to HIV, and not cancer.

Then you can talk about what lupus is. Here are some key points: 

• Lupus is a chronic autoimmune disease. 
• It has many kinds of symptoms that are different in everyone. 
• Symptoms are unpredictable and change over time. 
• Some symptoms are visible, and others are invisible.
• You may look okay, but that doesn’t mean you feel okay.

We have resources that can help you have these conversations if you’re an adult or a teen. And since men get lupus too, we have advice just for them.