10 Things Not to Say to Someone with Lupus
Last updated: March 2023
Lupus is an invisible illness, one that you cannot just notice by looking at someone. A disease that may not affect one's appearance, but it affects how their body feels or functions. When you say certain things to someone with lupus, you may not mean to hurt them, but you might come across as insensitive. Even though you intend to sympathize with them, your words can make them feel judged, ignored, or dejected. Here are 10 things to never say to someone with lupus or any other chronic disease.
1. But you look so good
Number one phrase to avoid. Remember that lupus is an invisible illness. Your friend doesn't have to look terrible to gain your understanding or sympathy. Instead, thank them for sharing their personal story with you.
2. You are too young to have lupus
Age has nothing to do with lupus. Many patients get diagnosed with lupus as a child or adolescent. Saying you are too young for this disease only reminds them of all the things they are missing out at their young age due to having this disease.
3. I'm sure things will get better
Although this is an act of platitude, there is time, place, and context to platitudes. For someone who has been dealing with a chronic disease for years and knows that this disease will be with them for the rest of their life, offering an authentic act of listening and sympathy is more powerful than offering empty platitudes.
4. Do you really need to take all these meds?
You are not a medical professional, and neither is your friend who has lupus. They are taking the meds because they have trusted their doctors and medical team in their treatment. When they talk to you about their condition, the last thing they want to hear is second-guessing their choices for their treatment plan.
5. Have you tried this diet?
Although a healthy diet can help with many things, lupus is not the product of our modern-day diet, processed food, soda, etc. Moreover, there is no scientific research that proves a specific diet can cure lupus. Avoid saying stuff like, "my coworker's sister-in-law had something similar, and she got cured when she stopped eating gluten."
6. Have you tried lupus meditation?
Although avoiding stress and striving for mental health is a component in flare management, your friend who has lupus already knows they need to take care of their mental wellbeing. Avoid giving unsolicited advice on meditation or suggesting it as a substitute for their medication.
7. You need to get more exercise
Similar to a healthy diet and mental health management, exercise is a component of a healthy lifestyle, but it is not a cure for lupus. A Lupus patient will exercise when their body allows them, and if their joints afford them to move. Telling them they need to exercise more makes them feel you are misjudging them as a lazy person.
8. I know how you feel, I am tired all the time.
No, you don't know how they feel. Chronic fatigue is nothing to compare with feeling tired after a bad night of sleep or being exhausted from a long day at work or running around with your kids. Chronic fatigue is a type of exhaustion that makes you unable to pull yourself out of bed, sit upright, and have a bite of food. Please do not compare it to the day-to-day exhaustion of a healthy and normal lifestyle.
9. I wish I could stay home all day
No, you don't. You don't know of the struggles of staying home because of a chronic illness. Be careful of what you wish for, and avoid this phrase as it's the most insensitive thing to say.
10. But we made plans weeks ago. You can't just cancel now.
If you have a friend or family member with lupus, you need to have flexibility in your plans with them. They make plans with you because they love you and want to spend time with you, but they never know when their lupus surfaces and nail them to their bed. If they have to call the day off despite the plans they made with you because of extreme fatigue. It doesn't mean they are flaky. They just need to rest, recharge, and reschedule their quality time with you. They are aware of the inconvenience they are causing you, so accept their apology and give them another chance to plan.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?