Lupus hair loss: managing the fallout

Remember that hair loss I mentioned a few months ago, the fallout that I thought was subsiding? Well...I was being optimistic. I thought it was on its way out (the episode, not the hair), but I'm still losing strands by the dozen. It's okay, though. This, too, shall pass. But man, can it be unsettling.

Speaking as someone who's lost a good portion of her hair multiple times (I've lost at least 40% of the volume four times, and at least 70% of the volume one additional time), I've assessed that there are several stages involved in hair loss. Here's how I would describe them:

Stage 1: "Wow. I think I'm losing my hair. That's kinda crazy." In this beginning stage, you're almost in awe of the loss. It's never good to lose your hair, of course, but the loss is so minimal, you're just kind of surprised that this lupus symptom is actually happening to you, just like it says it will in all of the lupus books. Still, you openly talk about the loss...kind of like it's good party conversation. It's not noticeable to anyone but you, so you don't give it a second thought, or at least not much of one. You think you might even just be blowing the whole thing out of proportion - optimistically thinking that the strands will cease to fall after a week or two.

Stage 2: "Hmmm. I'm really losing a lot of hair. Like, a lot." This is the stage where you can confirm, without a doubt, that hair loss is taking place. You don't know what's causing it, but you would like it to stop. Now. It's still not noticeable to anyone - maybe your spouse or close friends - but you know the volume is rapidly decreasing. It's no longer a topic of conversation - although you may consult a few close friends to see if they've ever experienced anything like this.

Stage 3: "Okay. This hair loss is not cool." I don't like this stage. It's the stage right before the stage where you decide to proactively deal with the loss. Until then, you're just kind of holding on for dear life. Literally. It's as if you can feel each and every strand falling from your head, and you do whatever you can to keep each one in its place. You no longer mindlessly fidget with your hair, and you don't tousle mid-day to make it look fuller or bouncier. You just try to keep your hair as still as possible in order to minimize the loss. At this point, you don't talk about your hair, and you don't want anyone else to mention your lovely locks (or lack thereof) either.

Stage 4: "Yes, those are bald spots. And yes, I'm losing my hair. ..but it's okay. I'm dealing with it." This is the stage where you find out what you're really made of. Although you may think this is the worst stage of all, it's not. As far as the bare spots on your head - sure, it's not going to get much worse than this. But as far as your mindset, and your ability to cope with and manage the fallout - things are looking up.

So you're losing your hair? Yes, it's upsetting and frustrating, and you wish it weren't happening to you. But you realize that you're more than just a few strands of hair on your head. Your identity isn't wrapped up in your appearance, and your long wavy hair (or short curly 'do) doesn't define you. It can't; currently, you don't have much hair to speak of, and yet you're still here, present and accounted for. You're still mustering up the strength and courage to deal with your hair loss, and with lupus, for that matter, one strand at a time.

This is about the time you look yourself in the mirror, admit that your hair situation is pretty grim, but decide that you're a big enough girl to deal with it. You've accepted this as a manifestation of your illness, one that you can't control, but one that isn't going to get the best of you. Even though you don't know how or when it will get better, you're going to hold your head up high, and believe that one day, that head will once again be full of hair.

Maybe there's even a little new hair growth on which you can and should pin your hopes. Hair does grow. It just takes time. So in that meantime, it's time to pull out all the stops. You cut way back on your shampoo days, you forgo the hair dryer and the straightening brush (because that's, like, the ultimate hair loss no-no), and you resort to barrettes, hair bands and anything else that keeps those remaining wisps under control. Just by waking up every morning and facing those bald spots, you're reminding yourself that lupus isn't going to win. Not now, now ever. You're stronger and more resilient...even in spite of your hair loss.

A friend and I were recently discussing the ol' hair loss issue, and I was reminded of all of the things that I've done in the past to manage the fallout, this most recent episode as well as in hair losses past. Good news is that I currently have spiky new growth at least an inch long over most of my head, so I know new hair is on its way. It's a real pain to contend with that short, stubby stuff as it's growing in...but I'm not complaining. New hair is new hair, plain and simple!

On Wednesday, I'll give you my short list of to-do's when I'm faced with the fallout, most of which I've employed myself over the past few weeks. If you have any additional tricks or tips - let me know. I'll be sure to add them!