What a Polite Lupus Warrior Will Not Tell You: Mind Your Business!

Kellie McRae avatar

by Kellie McRae |

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mind your business

“Mind your business!” Perhaps we really aren’t too polite to tell you this. What really happens is that some of your comments catch us so completely off guard that the thought of telling you to back off only occurs to us after the situation is over.

It seems everyone has a cure, everyone knows the cause and everyone has an opinion about our appearance and our experience. Minding your own story would be amazing since you really have only a small portion of ours. You can’t imagine what it is to sincerely struggle just to get out of bed. That’s not because you are just lazy and enjoying the warmth of your bed, but because the fatigue and the body pains are so intense that you can hardly move after lying down all night. (Notice I said lying down; I did not say sleeping.)

When you comment about how tired we look and add that we should drink energy smoothies, or that we are just lazy, we should calmly say, “Mind your business.” However, if you are offering to make said smoothie, I like them, so I’ll be nice. But when you call us lazy, we are so caught off guard by your assessment of what we are truly going through that, instead of us telling you where you should go and how fast you should get there, we are in shock.

When you look at us and decide that coconut oil, oatmeal scrubs, egg whites and whatever other home remedies you can come up with will work on our butterfly rashes, we know you mean well. We know you are trying to help, but sometimes the best help is no help. Mind your business! Don’t you know that if we could find something that would erase the thing that causes people to stare and offer unsolicited comments, we would be using it?

Ultra thin or too fat? Mind your business!

When we say we don’t eat red meat, night shades or garlic, your assessment of how we need to add this, or take away that, because we are too thin does not go over well. You have no idea that food is a trigger, that our stomachs rebel on a consistent basis for no reason at all. This week you can eat, next week you’ve got acid reflux, or worse, so bad that you are losing more weight or just afraid to eat. Mind your business!

When we are ultra thin, we know it. We don’t need you deciding and verbalizing that you think we are too thin, anorexic, bulimic or have some sort of eating disorder. This loss already has caused a dip in our self-esteem, so your negative comments are not helping matters. Mind your business!

When we order a giant meal and you comment that this is why we are heavy, the truth is, nosey, steroids are why we are heavy. But by the time we think to tell you to mind your business, we have stopped to think about how we feel too heavy and wonder if this meal is worth the ridicule. It doesn’t matter how many small meals are consumed; when the medication says you will be puffy, guess what? You will be puffy, and having people make snide comments about being heavy or what is being eaten will not change that. Mind your business!

Asking people in public if that is their hair is not only rude, but it’s not any of your business if it grew from their scalp or someone else’s. If they bought it, it’s their hair, just like your shirt belongs to you. Mind your business! It’s hard enough, as a woman in particular, to cope with the loss of your hair. Now you have people putting you on the spot by asking if what they see belongs to you. Does it make a difference? Will you see me differently if I am wearing a wig versus my own grown hair? You are in territory that is not yours. Mind your business!

So, for all of the Butterfly Warriors who have been made to feel too thin, too fat — too anything — because you could not simply mind your own story, I say to you for all of us. MIND YOUR BUSINESS!

Comments

Sheneka avatar

Sheneka

I love this concept, "MIND YOUR BUSINESS!" I have been battling systemic lupus for nearly 12 years and have wanted to utter those words often, as others have no idea of what we as lupus patients have to endure on a daily basis.

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Tim Bossie avatar

Tim Bossie

Those are some empowering words. :)

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Kellie McRae avatar

Kellie McRae

We just have to find nice ways to say them when a person really does mean well and is speaking from a place where they just lack knowledge.

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Kellie McRae avatar

Kellie McRae

It always amazed me what people feel they have permission to say. For the most part, I know that some of them mean well but some of what they say, as you well know, can be hurtful. Thank you for reading & commenting Warrior. I hope you will share this article with anyone you have ever wanted to say that to lol it is a "polite" way to say mind your business and you can just say, I'm spreading awareness ;-)

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Sheneka avatar

Sheneka

Right, in most instances people do mean well, and is just misinformed and/or uneducated to what lupus is and how it affects one's body. What does bother me, is when I am asked if lupus is contagious, SMH.. I have come across those who says, if I try various home remedies, herbs, and/or exercise more I will feel better. Unfortunately, what they don't understand is that it is not that easy, lupus is more complex than what the eye sees. I have learned to just smile, and say thank you. However, I would like to say, "mind your business, please" lol! I will definitely share this with my lupie sistas. Be blessed my sista warrior! #LsUp

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Kellie McRae avatar

Kellie McRae

I have had that question as well, I just take that opportunity to make them aware of exactly what Lupus is and what it does. They always want to know what caused it as well and my personal favorite is when they want to say "well, I think if you ate better" I then inform them that I am a former National level fitness competitor, poor eating habits had nothing to do with it and that blaming me for being ill makes about as much sense as blaming them for having a headache. Its all about showing them on terms they can understand that we are not to blame, we can't pass it on, we can't stop it once it starts and we are sick in spite of what we look like. I appreciate the shares lady, thank you for coming back and adding to the conversation.

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Melissa Spier avatar

Melissa Spier

I LOVE THIS! My own friends and family members don't understand the why or the how of this... thing called Lupus. I've just spent 22 days in the hospital only to be told to go home. Cat scanned, bone marrow biopsy,blood tranfusions, lymph node biopsy,3 high powered antibiotics 3 times a day,fever, fever,and FEVER. People still have tha audacity to say.... you look good?! Lol WHO ASKED YOU... MIND YOU'RE BUSINESS. ..

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Kellie McRae avatar

Kellie McRae

I do hope you start feeling better, I think sometimes they just don't know what else to say. This is not a fun disease and they don't often realize that sometimes saying nothing is so much better than speaking. Thanks so much for the comment, now get some rest :-)

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