Ten things to tell your friends about lupus
High school is a lot to deal with. Throw lupus in the mix and it gets a whole lot harder. On top of balancing classes and maintaining your social life, you also have to put up with symptoms like fatigue and joint pain.
And oh, yeah, somehow you have to explain lupus to your friends. Should be easy, right? It’s just a disease with no clear cause or cure that is different for everyone and which many people have never heard of. Ok, maybe not so easy.
Unless your friends know somebody else who’s living with lupus, chances are they won’t get it right away. But don’t worry, they’ll catch on. Just fight the urge to roll your eyes and be ready to tell them these 10 things—sooner or later it will sink in.
- It’s not contagious, relax. You can’t ‘catch’ lupus like a virus. So yes, you can still hug me. And you can still share my water bottle— you might catch my cold but you won’t catch my lupus. No one is quite sure how you get lupus, but scientists think it’s a combination of hormones, genetics, and environmental causes.
- I might be on the same medications as people with cancer or malaria…but I don’t have cancer or malaria. Yeah, it’s confusing. But some of the drugs that work well for other illnesses help with lupus too. Some medications used in chemotherapy for cancer patients also help control the immune system in people with lupus. Medications used to treat malaria can also treat skin rashes, joint pain, and sun sensitivity from lupus.
- Yes, it affects my immune system. But it’s not like HIV/AIDS. Actually, it’s kind of the opposite. People with HIV/AIDS have low immune activity so they’re unable to fight off infections, but people with lupus have a highly active immune system that attacks the body. And while HIV/AIDS is sexually transmitted, lupus isn’t.
- It’s more common than you think. You might think lupus is a super rare disease, but about 1.5 million people in the US have it. Selena Gomez has lupus. So does Nick Cannon. Seal has it too. It’s tricky to diagnose, so there may be a lot more people with lupus who haven’t been diagnosed yet.
- Guys can get it too. Lupus is definitely most common in young and middle-aged women (90% of people diagnosed with the disease are women ages 15-44), but anyone of any age can have lupus—guys included.
- No, I’m not lazy. You’ll probably notice me napping more than the average person. It’s not that I just really like to snooze—I need to. Chronic fatigue is a big part of lupus. If I don’t sit down or take a nap when I get tired, I could have a flare and start feeling really sick. It’s important for me to recharge so I have energy to do more later.
- I’m glad to hear I look fine, but that doesn’t mean I feel fine. It’s flattering that you don’t think I “look sick”…to a point. But trust me, when I say I don’t feel well, I mean it. Sometimes it may be more obvious that my lupus is acting up, like if I have a rash on my skin. But even if I look like myself, I might be experiencing joint pain, fatigue, or other problems you can’t see. Lupus is invisible that way, but it’s very real.
- I’m not avoiding you, seriously.I’m s orry I missed your party last week. But I promise I’m not being flakey. When I say it’s because I’m not feeling well, that really is the reason.
- I really, really need to stay out of the sun. In fact, I need to wear sunscreen all the time. Even when it’s not sunny. And even when I’m not outside. I know it sounds like I’m overreacting, but my lupus makes me sensitive to the ultraviolet rays in sunlight and even indoor lighting. It can give me a rash and make me feel fatigued. So I’ll stick with my floppy sunhat and SPF 100, thank you very much.
- “No cure” doesn’t mean I can’t still live a normal life. Lupus sucks. It’s a serious disease, and it can be deadly. But luckily there are a lot of medications to treat its symptoms and prevent flares. I need to work with my doctors to keep my health under control and listen to my body when I don’t feel well. But I can still concentrate on my goals and have fun like everyone else. Lupus is just one part of my life.
This publication was supported by Award Number CPIMP171139 from the Office of the Assistant Secretary of Health (OASH). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of OASH.