Wellness Diaries: Lupus Hair Loss

To be completely frank with you, I am a very hairy person. And, since I was little it has been a point of insecurity. My head hair is super frizzy and curly, my leg hair is probably thicker and more full than my husbands, and I’ve always had thin but very dark and noticeable hair on my arms. I started getting teased for my hairy legs in middle school and I could not wait to start shaving my legs, but my mom was very adamant that I become comfortable with my body (and not grow up too quick) and said I had to wait until I was 13 to start shaving.

Nowadays though, hair loss has been a serious issue. I first noticed this in college and just thought that I was stressed because of Organic Chemistry. I started losing full chunks of hair in the shower, I’d wake up with tons of hair left on my pillow, and I just stopped brushing my hair for fear that it would all fall out. This resulted in prominent bald spots on my scalp, but ultimately resolved within about a year.

More recently, the hair loss hasn’t been quite so drastic, but still noticeable to me. My hair has started thinning out with the hairline receding bit by bit. I’ve noticed small bald spots in my eyebrows and even my leg hair and pubic hair doesn’t grow back in some places. I’ve been focusing on treating secondary lupus symptoms as naturally as possible when they appear, and hair loss is definitely one of the biggest ones that I’ve struggled with.

Hair loss often occurs with lupus because of inflammation, which is one of the main symptoms of lupus. This means that once the inflammation hits the scalp or hair follicles, hair loss occurs. Most research says that in order to reverse the loss caused by inflammation the disease needs to be in remission. Obviously, that sounds a lot easier than it actually is! So, minimizing and coping with hair loss is what I’ve been focusing on. I’ve been lucky enough to go from 1-2 inch bald spots on my head, to some hair thinning and very tiny patches of bald spots. Here’s what I’ve done to prevent + regrow my hair and gain back my confidence:


  • No heat: I love wearing my hair straight. It is so much easier to handle and makes getting ready so much faster in the morning! But, constantly using heat on your hair makes it dehydrated, brittle, and ultimately weakens the hair, causing it to thin out. In order to let my hair heal as much as possible, I reserve using heat tools for special occasions like birthdays, fancy date nights, etc. When I do straighten it, I use the straightening brush by Amika. It makes it the whole process so quick and easy and I feel like it’s a little more gentle on your hair than a flat iron.

  • Silk pillowcase: I do not do this, but a few of my best friends do and they swear by using silk products in their hair. Silk is much gentler on your hair because it won’t pull or get caught when you sleep. So, even though you’re losing some hair throughout the night due to inflammation there won’t be any additional hair loss caused unnecessarily by your hair getting caught in the fabric of your pillowcase.


  • Strengthening shampoo + conditioner: I was using whatever shampoo and conditioner my hair dresser sold me when I first started to lose my hair, but I decided enough was enough and I did some research (i.e., asked the ladies in my office) on what to do to strengthen and regrow hair. Because Rogaine isn’t recommended for all lupus patients (unless you consult a doctor), I decided to make an intentional shift to start using strengthening shampoo and conditioner. From my office poll, I chose this one by L’Oreal.

  • Argan oil: I lived in Morocco for a few months a couple of years ago and almost every woman I met there swears by argan oil for their hair and skin. I learned that the fatty acids in argan oil can really help with hair loss because it stimulates keratin production! It also can help nourish and hydrate your scalp, which can help with any additional head irritation. My best friend’s mom gifted me this bottle, and I absolutely love it! Plus it smells amazing.

  • Collagen: Collagen is a protein that we all have in our body that is a major component of connective tissues. What’s great is that collagen also can help strengthen and grow your hair by preventing brittleness and thereby reducing hair loss. Another great benefit of collagen is that it can help prevent joint pain (!!) by helping to maintain the integrity of the cartilage within joints. I just put one scoop in my tea every morning - super easy and tasteless!

Confidence Boosters:

  • Headbands: I initially started wearing bandanas or headbands in an effort to manage some serious frizz that was going during the very humid NY summer (see thumbnail). It is just an added perk that they also hide hair thinning at my hairline. I love the Gavala headbands because you can wear them in so many ways and they come in tons of fun styles. I love playing around with styling my outfits with headbands and they’ve even become a bit of a signature thing for me since I’ve been wearing them so much!

  • Embracing my curls: As I mentioned, I’ve always had a bit of insecurity about my hair. But, with my breakup with heated tools, I’ve started to really like my crazy, wavy hair. I started with just wearing my hair down, big, and frizzy on the weekends. Then, I started to learn how to actually manage my curls and make them look even better with some products. Finally, I gained enough love and confidence to start wearing my hair down and natural to work! Sometimes I just get frustrated with my hair being in my face so I’ll clip it up with this amazing pin Carlos got me for Christmas. All in all, slowly learning to love my hair as it is has been a game changer in terms of boosting my confidence, but it’s still a work in progress.

  • Hair Chalk: Okay, this might sound a little weird, but the part in my hair is more of like a crevice rather than a part these days. Even though the volume in my hair sort of helps hide it, I still notice. So, my mom and I did some research and found this hair chalk that kind of helps your scalp to look more full. It basically works like putting loose powder in your hair and it really does help! I usually put this in just on days when i’ve slept on my hair a little funny and it causes some weirdness.