Some things are better left unsaid. The same is true when speaking to someone with Lupus. After reading Natasha’s post about Things You Should Never Say to a Single Mom on Epic Mommy Adventures, I was inspired to write a similar post, but for Lupus Warriors. Thanks Natasha!
I did my research, and found that there are a couple pages that also talk about the do’s and don’ts when talking to people with lupus! Like this one, and this one too. So, I just had to share my thoughts too!
I began this blog to inspire individuals with Lupus and to let them know that they are not alone. That someone out there cares about them, and that there is a life after the diagnosis. But today, I had to share some words of wisdom with those people who don’t know what Lupus is and how it affects us (but you can learn all about it HERE.) Hopefully, this will help them out just a little.
Image via Google Images.
“WHAT’S THAT ON YOUR FACE?”
I personally have never gotten this from anyone as Lupus has not affected my skin. But, for many of us, Lupus causes skin rashes. The most common is the butterfly-shaped rash that appears on the face. If you do not know about Lupus, sure, you can wonder what it is. But, don’t you dare ask about it. Even if it wasn’t a mark of Lupus, that is a personal question that shouldn’t be asked. Especially if you don’t know the person very well. Just keep that comment to yourself and Google search it later.
“YOU’RE OVER EXAGGERATING. IT COULD BE A LOT WORSE.”
My biggest pet-peeve is when people assume that Lupus isn’t that bad. Just because I don’t reside in a hospital bed does not mean that I’m not in pain. A boss of mine once told me that he believed I was exaggerating my condition. I was infuriated! If it wasn’t that bad, I (and every other Lupus warrior out there) would not have to take 4+ medications every day just to stay healthy and be able to come to work. Please do not think you know the struggles we face unless you have Lupus too. I’m not saying that Lupus is the worst thing in the world. I’m only saying, cut us a little slack sometimes. It really IS as painful as we say.
“YOU DON’T GET OUT ENOUGH.”
Sometimes, I feel as though my friends think this about me. I mean, with twins and Lupus, it’s hard to get a 5 minute shower every day, let alone get out of the house. If I was able to wake up every day without out any joint pain and swelling, fatigue, muscle cramps, headaches, and whatever else I have that day, then YES! I could get out more often, but until then, I’m happy at home. You should be okay with that too. But, if you aren’t, let’s act like you are.
“I’M SO SORRY.”
This may seem like words of sympathy, but it’s just the opposite. Saying ‘I’m sorry’ implies that something bad has happened. That the situation the person is in needs condolence. It makes us feel even worse about our condition. No need to be sorry, we didn’t ask for this to happen. It just did, and we are making the best of it. Instead, show us that you’re sorry by being there when we really need it. We will appreciate that a lot more, trust me!
“MY BEST FRIEND’S MOM’S COUSIN HAS LUPUS AND IS DOING GREAT!”
“MY COUSIN’S MOM’S BEST FRIEND PASSED AWAY FROM LUPUS.”
Lupus is a chronic disease. It affects each person differently. If you know someone with Lupus, please try to restrain from comparing. It just reminds us of how painful our situation is. Likewise, if you can help it, don’t mention that someone you know passed away from Lupus either. We are sorry for you loss, of course. But, it just makes us wonder if we will be the next one to die. That’s a scary thought that never seems to go away for most of us, let me just tell you. So, we would rather not have you remind us of it.
“YOU HAVE SO MANY BRUISES. IS EVERYTHING OKAY?”
Yes, everything is okay. We are not victims of abuse, just victims of prescription drugs. Many of us take medications that cause our skin to thin, which allows for easy bruising. I have a bruise for everything! When I was in the hospital to deliver my twins (you can read my story HERE), I got a bruise from the IVs, from the epidural, even from laying in the bed too long. So. Many. Bruises! And before I was diagnosed, my skin was clear as day. Personally, this is the most annoying question to hear. Even if I didn’t have Lupus, I think it’s my business why I have so many bruises.
“HAVE YOU LOST/GAINED WEIGHT?”
I thought it was common knowledge never to ask about a woman’s weight. Well, apparently I was the only one that knew this. Because of Lupus, my weight easily fluctuates. One day I’ll gain water weight. The next week I might lose weight because of a decreased appetite. And Prednisone… Oh, Prednisone! That drug just puts pounds on for no reason. So yes, I may blow up and deflate like a balloon, but let me worry about it. Even if you’re trying to give a compliment, it might just be better not to mention it.
“YOU WON’T BELIEVE HOW TIRED I AM.”
Actually, we do. As a person with Lupus, I am ALWAYS tired. I could have just woken up from a glorious night of beauty sleep, and I’ll be tired within the hour. Our bodies are working so hard to fight off the bad things (that don’t even exist), that we are constantly fatigued. So, if we are having a who’s-the-most-tired competition, I think we have you beat.
But, the number one worst thing you could possibly say to someone with Lupus is…
“BUT YOU DON’T LOOK SICK, SO IT CAN’T BE THAT BAD.”
Yes, it really IS that bad! Why would we lie about being in pain 24/7? I asked a few of my buddies that also struggle with Lupus, and they agreed that this comment is by far the most frustrating. Lupus is a chronic condition that affects the immune system. It can take over any organ of the body and cause damage. That means the skin, the heart, the lungs, the kidneys, the eyes, anything! And for most of us, it affects more than one place. It is a choice for us not to look sick. We CHOOSE to look this way. We CHOOSE to act this way, to live this way! I personally am not going to sit around and cry ‘Whoa is me!” I’m going to live my life, and enjoy it! My children won’t suffer because of my condition. I’m actually a better mom because of it. And for someone to have the audacity to measure my pain based on my appearance and way of life, that’s just uncalled for. So refrain from saying this to someone with Lupus. It just signals the ignorance that people have toward Lupus. It really is a struggle to live with Lupus and to educate others about a disease that can be so transparent. Please believe us when we express ourselves to you.