What a Polite Lupus Warrior Will Not Tell You: 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!