https://resources.lupus.org/entry/men-what-to-say-when-people-ask-you-about-lupus

Men: What to say when people ask you about lupus

Lupus Foundation of America

Resource Content

Answers to questions about lupus in men

As a man with lupus, have you ever been unsure of what to say when people ask personal, awkward or even annoying questions about the disease? Does it seem like the questions you get about lupus are always the hardest ones to answer — especially without sounding rude, insecure or defensive? 

If so, you’re not alone. We asked several men who have lupus to help us put together some sample responses so you’ll know what to say the next time you’re faced with those kinds of questions.

Keep in mind that most people don’t know much about lupus — and you’ll likely have to explain things over and over (and over) again. But that’s OK — we’ve got your back with this handy list of responses. Now you’ll be ready to handle these conversations with ease and patience (no tools, work or sweat required).  

A-1: No one knows exactly what causes lupus, but anyone can develop it. Some groups of people are at greater risk for developing it, like women, but people of all ages, genders, races and ethnicities can develop lupus.
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A-2: Men can develop lupus. Experts say about 1 in 10 people who have lupus are men. So if you consider all of the people who have lupus — at least 1.5 million people in the U.S. and 5 million worldwide — there are a lot of men who have the disease.
A-1: I wish I felt as good as I look! But lupus is causing inflammation and pain inside my body. Sometimes it’s called an invisible disease, and that’s why. So yeah, no one can see it, but I feel it.
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A-2: The thing about lupus is that the symptoms can come and go. So when the symptoms come back and my lupus is active, that’s when I feel really sick.
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A-3: I know it’s hard to understand what I’m going through. My doctor is really good at explaining lupus. It would be great if you could come with me next time I have an appointment.
A-1: I know it’s hard for you to see me not feeling well, and I really appreciate that you want to help. But, as you know, I want to do what’s best in coping with this disease. So when I’m resting, I’m not giving up and being lazy. Some days, the best thing for me to do is rest. On the days I feel better, I’ll be more active and do the things that I enjoy and things we enjoy doing together.
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A-2: I know you’re worried about my health, and that you want me to be as healthy and active as I used to be. But it would be better for me if you would trust me to listen to my body and get extra rest, rather than push at me to be active all the time.
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A-3: I know it’s important to balance rest and activity, so let’s make it a priority to take a walk together every day.
A-1: [If your friends don’t know you have lupus] I haven’t had a chance to tell everyone yet, but I’ve been diagnosed with lupus. It’s a chronic disease that’s not contagious, but it can cause a lot of different symptoms and takes a lot to get used to. But be sure to tell everyone that I definitely want to get together as soon as I’m feeling better.
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A-2: [If your friends know you have lupus] My lupus has been worse lately, but as soon as I’m feeling better, I’m there. Just send me a text the next time you guys plan to hang out — I’ll let you know if I’m able to join you.
A-1: You know I love to play with you, and whenever I can, I will. But having lupus means that some days I’ll only be able to sit in the shade to watch you play, or coach you from the sidelines.
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A-2: I know it’s not easy to understand, but lupus is making me feel really tired today. Let’s think of something that we can do together inside.
A-1: I wish I could do it — especially since I really don’t like other people working in our yard! But lupus sometimes takes away the strength I need to do the things I want to do, like the yard work. So I’ll need someone to help me with it until I feel better and can do it again myself. But don’t worry — I won’t let anyone mess up our yard.
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A-2: Being out in the sun makes lupus worse, and lupus also causes a lot of joint pain. Both of those things make yard work really hard for me right now.
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A-3: Lupus symptoms make it harder for me to use the tools the way I used to. But you can help me do some of the work. That would be a great help to me right now, and I’ll gladly show you how to do it.
A-1: I run out of energy at the end of the day, so your mom and I decided to take turns driving you to practice. Now we’re both able to see how well you’re doing and spend time with you.
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A-2: Lupus takes a lot of my energy during the day. But when I rest after work we can spend time together when you’re home.
A-1: Lots of people with lupus are able to keep working, especially when they can make changes to their job duties or can switch to flex time or teleworking. Unfortunately, that wasn’t possible for me.
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A-2: My lupus symptoms of [insert your symptom] and [insert your symptom] made it impossible for me to keep doing the job I had. I’m hoping I can train for a different job, though.
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A-3: I’m planning to go back to work when my health improves, but my doctor says what I need right now is to rest and give the medicines a chance to work.

These are just a few examples of how to explain your life with lupus. And remember — the more you know about lupus and how it affects you, the better you’ll be at answering people’s questions. You can also refer people to this website (resources.lupus.org) for more information.