There’s nothing more I hate than hearing, “Oh, I didn’t know you had lupus.”
How would you know?
Lupus is a chronic auto-immune disorder, where my immune system attacks and destroys healthy body tissue. It can affect any part of my body – my skin, my joints, my organs, even my hair. But it is a silent disease, there’s no way anyone can tell by simply looking at me. That’s the difficult part.
There are days I’m not feeling well, where my muscles and joints are tired and achy. But you can’t see it.
And when other people can’t see what’s wrong, it’s hard to explain. But there was one part of experience that people could see.
Almost three years ago, when I was diagnosed with systemic lupus, my hair began to fall out.
After transitioning and then a big chop, I wasn’t prepared for this.
I’m not even sure what happened. Maybe my body went into shock from the meds.
Whatever it was, I couldn’t touch my curls. Any manipulation and I would end up with clumps of hair in my hands.
My hair was falling out and I had absolutely no control over it. I tried everything. Going to salons, getting treatments, and nothing helped.
So I turned to weave.
Before this, I had worn a weave. It was always an option. But I always knew I could take it out and my hair would flourish. But during this time, it was mandatory. I had no choice.
That was hard to accept.
I had to take one sew-in out and get it put right back in.
I started to hate it. But I felt like lupus was eating my hair alive and I believed I looked crazy without it.
Eventually my poof came back. But my texture was different. I had to learn to work with my new hair all over again.
But I cherished my curls, so much.
Losing them made me realize what I once took for granted. And the regrowth of my golden locks motivated me to take care of them, to ensure they were as healthy as they could be.
I often wonder what I would do if I ever lost my hair again, because my curls are truly a part of me.
I can only hope it would be easier for me to accept, because at least this time, I’ll know that I’ve taken the time to cherish my curls while I’ve had them.
Now, I’ve started loving my hair even more than ever before.
Have you or someone you’ve known ever lost their curls? Share your experience in the comments below.
Rae is a Florida native, and graduate of North Carolina A&T State University. She started blogging in 2015, and later moved to NYC, landing her first job at Black Enterprise Magazine. She now attends New York University. Today she continues to blog, sharing her big city experiences as well as her love for natural hair and fashion.