World Lupus Day

World Lupus Day

I didn’t really know this was a thing.

This “World Lupus Day”.

I’m having a flare up right now and it’s been a lingering thing, mostly from stress, because I have a lot going on right now. An unprecedented amount of bills from medical and car expenses, a daughter heading to the hospital for a full month, another dealing with some growing pains, and I’ve got my own “stuff”.

So much can just fuel the flare ups, fan into them, making them worse.

But let me tell you something . . . Lupus doesn’t define me. At Least Not now. But it has.

I was telling my husband just yesterday some struggles I was having pertaining to different things. I don’t like to answer people when they ask me how I am or how my daughter is. Mostly because I know that I’ll “unload” because my heart is on overwhelm . . . the kind that I’m convinced only a good nights sleep in the arms of someone you love can fix. Also, I have considered if I don’t tell people how we’re doing then they can assume we’re fine.

Here’s the thing. . . I’m invisible.

Nobody asks me to do anything anymore because for too long they heard, “I’m not feeling well”, or mostly just “Rosalie is sick”. Now people assume I’m broken or permanently sick or always and forever hurting. They assume my daughter will never “not be” okay enough for me to go out, which is not true at all, and I can’t do anything at all. I’ll always put her first, but I was “me” before I was her mom and I was somebody. But nobody sees me. Nobody, nobody at all truly sees through to me. Yes, God, but nobody else. I long for anyone to see me, to be present with me.

And words hurt. Something as simple as last week when a friend approached me about something I was doing for my church and a concern they had that I had too much on my plate (I’m headed to a hospital for a month) and they didn’t think I needed any stress even before that (it’s not stressful at all, it’s simply posting stuff on social media and it comes basically effortlessly; now it may not be the prettiest graphics b/c I’m not super artsy, and the guys in the office do that for my reg. job, but it just comes easily). I respectfully disagreed with her.

I told my husband the person who allowed me the opportunity to serve in that respect is the first person who didn’t assume I was broken or incapable just b/c I have an autoimmune disease or have a sick child at home. And trust me, my heart could’ve burst, b/c I’ve spent plenty of time crying in the isolation.

Look, it’s reckless for us to not educate ourselves about the autoimmune diseases plaguing our loved ones. Education is key. It’s key. We should all make it our goal to become life long learners and it really haunts me that I’ve missed so many opportunities to make memories, build relationships, and serve in so many facets just because people assumed I couldn’t handle it or wouldn’t be capable. I’m on my guard forever because of what other peoples opinions are of me. Not because I’m worried if they like me . .. because I’m worried what impression I’ll leave . . . do I let them know I hurt when I do and let them assume they shouldn’t ever bother including me in anything, ever? Or do I “fake it till you make it” and pretend everything is delightful and basically let them believe I’m fine, when I’m dying from joint pain, fevers, and fatigue so tiresome I feel like I’m trudging through muddy waters wrapped in a sleeping bag? What do you say? I don’t have the words to tell it like it is.

Find out more about World Lupus Day here.

You might be the missing link for someone with Lupus. You may be the comforting hand, the listening ear, the warming smile, the encouraging word, the kind heart, the friend that includes.

Sometimes all people need is to be included.

“My command is this: Love each other as I have loved you.” John 15:12

“And now these three remain: faith, hope and love. But the greatest of these is love.” 1 Corinthians 13:13