Wednesday, March 26, 2014

Lupus hair loss: playing it safe or living in fear?

As many of you know, I am no stranger to lupus hair loss. I've actually lost my hair multiple times due to my illness. Some bouts I would categorize as drastic hair loss, others I would put in the significant thinning category. Every time I start to lose my hair, I'm never sure what the cause is - I just know I want it to stop. My theories for causation in the past have included medication (like heavy doses of intravenous steroids in the hospital), severe anemia, or just severe symptom activity. (Dr. David Fiorentino does a great job of answering the question of causation in a string of Q&A on lupus hair loss found on the LFA website. Click here to check it out. I like his answer to question #2 in particular!)

You can read about my personal hair loss stories here, but as far as damage control, I've tried everything. I've gone short, I've kept it long, I've wound stringy strands around my head to mask bald spots. I've used product, and then not used product. I've worn hats, played up my jewelry, all in an effort to preserve my precious, thinning hair, or at the very least, detract from it. I've shed many tears over my hair, too.

But not last week. Last week, I decided to be bold. I decided it was time to cut my hair. I've been letting my hair grow all winter long, primarily because I was enjoying my long, thick, healthy locks. (When you've experienced thinning, wispy, stringy locks before, you know when to celebrate how good you have it.)  But I was also holding onto my hair out of fear. Because I've been contending with this current flare since August, I was playing it safe, just in case my increased symptom activity decided to set off a round of hair loss. But I decided that playing it safe for too long can be detrimental. I was no longer just being conservative, or preemptive. I was actually being fearful. Month after month, I was setting myself up to anticipate the loss, to fear its imminent arrival. But now, after almost 6 months, it's time to get back to living. Proactively. With lupus in tow.

Regardless of what this current flare decides to do, I needed a style change. If I do end up losing a ton of hair due to lupus, I might as well get used to having a shorter, newer 'do anyway. Thankfully, my girlfriends came to the rescue, and on my recent girls' weekend, we scoured the internet for just the right picture of what I wanted. I didn't go drastically short...just above my shoulders to cut off about 3 1/2". But it's new, and different. And it's me. It's not me keeping my hair long for lupus. It's me cutting my hair because I wanted to. And if lupus decides to take a few strands here or there - so be it.

After all, I have a brand new hair 'do to enjoy.

7 comments:

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Nicole said...

Hi Sara,

Thank you for this post! I read it when you first posted and just came back to read it again because it's so encouraging to me. I have Sjogren's and have also lost hair a couple of times - in the "significant thinning" category. I also just had a big flare, and wonder if I'm headed for another round. I'm not going for another style now - maybe this summer. It's just very encouraging to hear the way that you don't let lupus run your life but the other way around. I have learned so much from you.
Thanks again,
Nicole

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Duane Simpson said...
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Duane Simpson said...
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Dr. Sara Lea Salas said...

Hi Sara! Can I just say how inspired I am upon reading this post of yours? Most people are afraid and crying rivers because of damaged hair and falling out, but you are facing hair loss due to lupus. I think for a woman who treasures her hair immensely, this is deeply admiring. :)

Dr. Sara Salas @ Baja Hair Center

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