Shedding More than My Lovely Locks, Part One

This is Part One of a three-part blog series taken from Chapter 6 of my book, "Despite Lupus". This chapter, titled "Loosening Your Grip", focuses on re-evaluating your expectations and goals. In doing so, you may discover that your self-image is dangerously entangled in your career, accomplishments, or appearance, all of which may be forced to change due to your disease.

About a month after I was discharged from a week-long hospital stay due to complications with my disease, my hair started falling out. At first, it was just a strand or two at a time, showing up on my pillow or in the shower after washing my hair. Over the course of a few weeks, those strands turned into clumps, and I couldn’t even slip a shirt over my head without a fistful of hair coming loose. Even then, I wasn’t too concerned. Since my diagnosis several years earlier, I’d lost a considerable amount of hair on two separate occasions. During those previous instances, the loss wasn’t too substantial and stopped after about two months. In fact, after each of those bouts, you couldn’t even tell that I’d experienced any alopecia, as hair loss is clinically called. My husband and I could tell that my thick head of dark hair had diminished, but others around me never would have guessed.

I was beginning to realize that this time was different. The hair loss was much more drastic, leaving me with mere strands at the two-month mark. I started pinning my hair up in a bun to try and mask the obvious bald spots, but my hair became so thin that no amount of “comb over” could hide the loss. Two things forced me to finally own up to the fact that the loss was abnormal and that I needed to seek professional medical attention.

One was that my thin wisps of remaining hair no longer held the tiny, baby barrettes in place that I was using. I hadn’t started with those mini clips, but had been forced to progressively downsize from the big, chunky ponytail barrettes I’d started using just weeks before. I’d been through about 5 different sizes before finally bottoming out at the newborn baby clips.

Secondly, Johnny, who had lovingly checked me for bald spots every morning before work, suggested that if I thought it might help, I could always look into getting a wig. He always reassured me that I looked beautiful no matter how much hair I had, but he knew I was nearing my breaking point. I was frustrated with the drastic change in my appearance and infuriated that the loss hadn’t subsided. I was probably most upset that my positive, “It’ll grow back” attitude wasn't working yet. I was feeling violated, naked, and abnormal; when I glanced in the mirror, I didn’t recognize the person looking back.

Because I’d consulted my dermatologist twice before, I knew the drill by this time. He’d ask me to perform a painstaking, week long hair count, which involved no less than the following steps:

1) Collect 7 envelopes and label each with the date and day of the week for the seven days of hair collection.
2) Vacuum the floor of the bathroom and bedroom and brush off or change pillow case and head of bed at the beginning of the week. Clean combs and brushes and remove all hair.
3) Beginning at 12:01am of day one and continuing until midnight of each day, or for any other 24 hour period (e.g. bedtime to next bedtime), collect all hairs that fall from scalp and place in an envelope for that day. Remember combs, brushes, pillow, shower, sink, drain, collars, etc.
4) Mark the envelopes on the days of shampooing with an “s” or the word “shampoo.”
5) At the end of the week, clean off a table with a bright light and contrasting background. Open each envelope individually, count the number of hairs, and write it on the outside of the envelope. Put the hairs back in the envelope and seal it.
6) Bring the envelopes to your next appointment for your doctor to evaluate.

Also noted on the instruction sheet was the following:

We recognize this is not exact but it is economical. It does give us a rough idea of the degree of hair loss. A normal daily hair loss count is up to 50-100 hairs, and up to 150-200 on shampoo days. Our bodies replace that many hairs each day.

It turned out that I had quite a few strands to count. During my past two rounds of hair loss, I averaged about 200 hairs on non-shampoo days, and somewhere around 350 hairs on shampoo days. The loss was definitely elevated, but the doctor assured me back then it wasn’t anything to be extremely concerned about. However, when I performed this recent hair count, I was losing between 500-700 hairs a day, even more on the days I shampooed. By this point, though, I had stopped shampooing my hair in a traditional manner, and had taken to creating a lather of shampoo in my hands and then gently patting it onto the few brave strands of hair that remained.

With significant hair loss confirmed, what was I to do next? Stay tuned for Part Two of "Shedding More than My Lovely Locks" tomorrow.


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