Cruising with Lupus


I recently returned from a week-long cruise filled with sleep, food, and more sleep.¬†Here’s an exchange I had with one of the employees on the ship. Enjoy! ūüôā


Jewel (me) To a twenty-something yr old hostess in the restaurant

Hello! Do you think I could get my water bottle filled up before I leave the ship for my day excursion?


Sure, let me get someone for you.



Hostess stares at me with a weird expression

 So were you burned or something?

Jewel paused to quickly determine if I want to give a long or short answer. 

No. I have Lupus, which is an autoimmune disease that can damage the skin.



She kinda ignored me after that, which is fine but couldn’t she have done so after I received my water? I waited for the mysterious water person to fill up my bottle for about 3 minutes before taking off and having someone at the bar do it. Now, I’ll probably get some backlash from folks but I’m pretty sure Carnival would not have been happy with her had I decided to complain about her service and¬†rude question. But,¬†I saw no real gain in getting her in trouble so I went on with my day. Hopefully she did too. More importantly, hopefully she learned something.

Because I’ve been getting questions like this all my life, the fact that I’m asked does not bother me. I like questions!! I have no issues with helping people understand all that Lupus entails–even though it’s quite subjective, this disease. The Discoid lesions are not something people see so I expect questions. What usually makes me grind my teeth together is the manner in which people ask me. You can ask a genuine question without trying to guess. Perhaps my scars look like I was burned. Okay, I can live with that. But wouldn’t you feel better if just asked me rather than assume?

What do you think? Do you experience similar situations? How do you handle them?