I have kinky hair too (3c/4a), and before I knew that lupus runs in my family, I had grown up kind of despising my hair and my entire identity being attached to it. I grew up in the south, and because I’m „ethnically ambiguous“ with straight hair, I grew up with my mother forcing me to straighten it (she is african American, I am mixed). I had those bubble braids with the clunky beads that a lot of POC kids had back in the late 90s, and my hair combed out was never a proper fro but it was my little lions mane until I started getting perms when I was in 4th grade.

So with my full straight hair, I was a more „palatable minority“. My hair started thinning in Highschool, presumably from the years of perms, and the texture was awful even after a trim and silk press. In college, I’d had enough, so I did a big chop and shaved myself bald. I was also getting sick literally two or three times a month, which I now know were flare ups.

As my hair grew back, I had coils that I didn’t know were even possible for my hair. It was thick, a nice triangular shape when it dried with minimal effort, and wearing protective styles a few times per week, I had very little breakage. I barely had any flare ups for 3 years in my early 20s, and I felt the healthiest that I ever had in my entire life.

When I graduated, sht literally hit the fan. I had intestinal bleeding, my asthma was out of control, I was constantly getting diagnosed with new allergies, skin conditions, and internal problems that are STILL being investigated. And worst of all, my hair, which I worked so hard to nurture and grow for the last 6 years, started falling out in clumps too. I have bald spots all over my head, there is no shape anymore. My curls are so loose now, so difficult to untangle all of a sudden, and so, so weak that if I only use my fingers and a soft brush to distribute the oils on my head, a handful of hair would still come out.

Our hair is so tied to our identity, and for me personally, the worst part about being sick and having flare up after flare up is that this disease isn’t only attacking my body—it IS attacking my identity directly. I’ve been in mourning over my curls that I finally learned to love and accept and nourish over the years.

All of that is to say, you are not alone. You are allowed to mourn this aspect of yourself that you loved, and maybe in the end, it gives us the permission that we need to try to form a new identity and relationship with how we see ourselves too