I have a very tiny family. Basically one husband haha. My family and all my friends live in a different country. I do have wonderful coworkers who truly care...and that's it. What about others? Distant or online friends? Nope. I actually believe that online friendships exist, but just like real-life friends, online ones can show ignorance too, and that issue only comes to the surface when there is trouble.
I have a chronic illness the majority have no clue about. Why would they? Unless you run into it, you don't have a reason to learn about it. That's not the only problem though. The real problem is when they do run into someone with a chronic illness, but they still don't even consider to learn more. Instead, they just keep their assumptions. This ignorance will lead to something that I have been noticing: They don't take you seriously. Here's why...
"You can live with a chronic illness, right?" After all, it's not cancer. Wrong. Many patients with SLE have to face serious organ damage even while getting treatment (if they get appropriate treatment because, in a lot of cases, they will be tossed around for months or even years without a proper diagnosis) which can result in death or complete disability.
"Really? Are you in constant pain? But...you look fine." Guess what? Organ damage is not visible, pain is not visible. Not everyone will cry and complain. I hear this from fellow patients. What's worse is when they think you're just weak or pretend!
"I'm sure you're just tired and depressed because you don't exercise or eat healthy". It's a horrible, and sadly, common opinion.
You can always correct them. It's not always going to help. This ignorance often kills empathy. Someone with a different type of illness will receive support. You may not. They may not even ask how you are doing. Please don't let this discourage you. It's not your fault. There are people who care, but you may need to look further to find them. There are good counselors, doctors, and support groups that can help. Awareness and advocacy are crucial. Lupus is officially called an invisible illness because you may not appear sick at all. It will only become visible when all who are not affected become aware of it. At that point, it's up to them what they do about it.
Photo credit: ALSA Research
Great info!