A few of you may or may not have noticed that I’ve been wearing a lot of hats lately. There’s a reason, and a reason that isn’t quite so easy for me to discuss but whoo, heyyy. Here goes.
I mentioned on instagram a few months back (here) that I have been experiencing pretty bad Lupus-related hair loss. Since being diagnosed with Lupus nearly a decade ago, I’ve definitely had my ups & downs with the disease. Some of the symptoms of the disease are more annoying than others: joint pain, tiredness that makes your brain feel like it’s full of cement, tiredness that makes your entire body feel like it’s full of cement, face rashes, mouth sores, dizzy spells–the fun never ends! But perhaps for me, one of the more difficult symptoms is the hair loss.
The other symptoms make me merely feel sick and puny; the hair loss makes me actually look it.
For those of you unfamiliar with Lupus, there are essentially two phases of it: flaring and remission. Flaring is when I’m experiencing the symptoms, remission is when I am not. There are a lot of things that can trigger flares–anything from the sun, to certain foods, to stress, to tons of currently unknown factors. Stress and the sun are the biggest for me, and while I’ve made strides in my life to help reduce stress and become a sad little vampire, it’s not always easy to completely avoid those triggers. My husband and I had a rough and stressful year this year as a family member spent several months in the hospital battling a near fatal illness; throw in a few other normal-life stressers, some trips to a sunny clime because the only thing more fun than spending the summer with my face pressed up against a window looking out from the inside is to do that exact same thing in a tropical locale, and voila–it’s been something of a never-ending flare for me.
I had bad hair loss when I was first diagnosed with Lupus in the form of bald spots roughly the size of quarters all over my head. But as I began to take steps in my life to manage the disease, the hair loss eventually stopped and the hair slowly grew back. No big deal.
This time around my hair has been falling out nonstop, even worse than before. I’ve probably lost about 1/3 of my hair over the past five months with no end in sight–including my eyebrows. It’s the worst on my sides and tippy-top of my head. I didn’t have a lot of hair to lose to begin with; my identical twin sister and I often joke that we were each born with only enough hair for one person between the two of us. In other words: any sort of hair loss is hard to deal with; extreme hair loss is…yikes.
It’s difficult for me to write about this because…well, I’m not exactly sure why. Perhaps it’s because I’m a woman–I’m supposed to have amazingly thick, lustrous bouncy hair ‘cuz Jennifer Lopez schilling for Pantene says so. Perhaps it’s because I’m a fashion blogger–I want to feel good about the pictures I share on the internet. Perhaps it’s because I feel like it shouldn’t bother me, and so the fact that it even bothers me bothers me–I feel superficial and vain for caring. And most importantly, perhaps it’s because I am married to an amazing man–he has promised to love me in sickness and in health, ’til death with bad Donald Trump-esque combovers to hide our balding parts…do we part.
But every time I take a shower I can feel clumps of hair sliding down my legs; every time I vacuum the canister is tinged red with my hair; every time I look in the mirror I don’t just feel sick–I look sick. And man, that’s just…hard. Especially after nearly six months of it, I am kind of over it.
If I’ve realized one thing in the past year, however, it’s that life is short. I have also learned, especially after my instagram post and some of the responses from you guys, that lots of women actually deal with this. And lots of women feel exactly as I do, and by not talking about it or sharing my experience with it I just might be silently giving in to the bizarre idea that being sick and dealing with uncontrollable hair loss is something to be ashamed of or embarrassed about.
There’s no point in letting it bother me (even if, deep down, it always kinda will); there’s also no point in staying home and hiding on the days I do feel well enough to venture out. I can’t control it–it’s going to fall out until it eventually stops. Hopefully someday it will stop, and hopefully someday it will grow back. All I can do at the moment, according to my doctors, is hope.
And wear clip-in hair extensions! And fun and fancy hats, of course. Whatever it takes to keep enjoying and trucking through life, you guys–that is what is truly important.
If you read though all of this: thank you from the bottom of my heart. It’s funny. I originally started this blog so many years ago to help myself cope with this illness. I focus on fashion because it is something I dig, but more importantly: it is something I can still control while dealing with a disease that is largely uncontrollable. I know I don’t blog about personal matters much anymore, but I am hoping this post will help others struggling with this same issue. Simply writing about it makes me feel better–hopefully someone reading this will feel better about it, too.
So if you are a fellow person also struggling with this: you are not alone. Lupus isn’t the only disease that can cause alopecia areata–here are a gazillion different diseases that can cause this and it can happen to anyone. I am currently working on a more comprehensive blog post with information on the hair extensions I wear, the dietary modifications I have made so my hair hopefully grows back nice and healthy, and how I style my hair to hide the bald spots on the occasions I can’t hide under a hat, too. I’m putting the finishing touches on it, so please check back.
Now an outfit! Feeling a bit Colorado-cozy:
*And don’t forget to check out The Big Daily List of Sales & Deals for up-to-date coupon codes & discounts for nearly all of the retailers featured above, too!