Living With Diabetes: My Hair

I noticed it for the first time about a month after getting out of the hospital. I ran my fingers through my hair one day – sitting on the couch, maybe? – and noticed a lot, like, a lot came out in my hands.

Which was weird.

But then it kept happening.

I’d get up from the sofa and notice long strands of my hair left behind, just laying on the couch (gross). I’d wake up in the morning and it would be in the bed. But most noticeable would be when I showered. I’d lather up, and, in dragging the shampoo through my hair, would come away with huge, like, huge clumps of it in my hand.

It was awful, and freaky. And it was not lost on me that I had just spent a month in denial of mysterious symptoms which had almost led to, you know, like, dying. So not only was losing my hair humiliating and frightening for vanity reasons, it also brought up the very real, very horrible threat that Something (with a capital S) was wrong again.

And at this point, I couldn’t handle Something with a capital S. I could barely handle something with a lower case s.

This time, though, I didn’t wait. Thinking that this probably had something to do with diabetes (hello – EVERYTHING happening in my body at this point probably had something to do with diabetes), I shot an email to my endocrinologist explaining that I seemed to be shedding hair faster than…uhm…something that sheds really fast? (Sorry, I’m not up on hair-shedding metaphors. Frankly, I think hair is disgusting, and don’t spend much time thinking about it detached from bodies.)

And then, of course, I googled it.

Oh, google. You stupid, horrible, horrible thing. I hate you so much, and yet I cannot live without you. On that day, you filled my head with horrible, terrifying images and ideas. See, here’s the thing: Autoimmune disorders tend to beget autoimmune disorders. And I had an autoimmune disorder. Had the floodgates opened? Was I going to be doomed to collect autoimmune disorders until the end of my days?

As I’ve explained, in my autoimmune disorder, my immune system mistakenly thinks the beta cells in my pancreas are foreign invaders. Well, turns out there’s an autoimmune disorder for just about everything. Your immune system can pretty much confuse any healthy part of your body for a foreign invader. In this way, there’s an autoimmune disorder where your immune system mistakenly decides your hair follicles are foreign invaders. It’s called alopecia, and, with some exceptions, it’s pretty much irreversible.

Can I just say, on behalf of anyone who has ever suffered from an autoimmune disorder: WHAT THE HECK, IMMUNE SYSTEMS? GET YOUR LIFE TOGETHER!

Horrified that this could be what was happening to me (primarily because I did NOT WANT ANOTHER AUTOIMMUNE DISORDER) I waited for a response from my endocrinologist. As anyone who’s ever struggled with hair loss knows, it’s an especially awful experience. You’re not dying, and a part of you feels a bit vain and a bit silly for being as upset as you are, but it’s a devastating, devastating thing. I’ve hated my body for 27 years, and one of the few acceptable parts of it has been my hair. It’s my major inheritance from my dad – very dark brown, almost black, which stands out nicely on my creepily pale skin. I started going gray at 16 but fortunately it hasn’t taken over yet, and frankly I like my few silver strands. But now they, just like the black ones, were abandoning me indiscriminately.

It was kind of like my entire body was giving up on me.

In my first piece of good news since diagnosis, though, it turns out I did/do not have alopecia. Instead, my endocrinologist wrote right back with a ready explanation, that, mercifully, had nothing to do with autoimmunity: It was probably something called telogen effluvium.

Your hair grows in cycles – at any given time, about 85% of it is growing, and about 15% of it is in the telogen, or resting, stage. Telogen effluvium is when that ratio unbalances – more hair begins to “rest”, and less to grow. It can be chronic, and sometimes the causes are unknown, but more often it’s acute, and occurs after “shock” to the system.

Apparently, losing your hair is pretty common after having a kid? Because that’s like, literally the ultimate “shock” to the system I guess. To which I say: that sucks. Super sorry to folks who have had kids.

It can occur after surgery, after high fevers, after severe infection, or after any major trauma to the body. In my case, we didn’t have to look far to determine the cause: DKA. I did all the requisite blood tests to determine nothing else was going on – my iron was fine, my CBC looked good – and then got the definitive diagnosis: telogen effluvium.

So, what fantastic mechanism has modern medicine evolved to combat this debilitating and humiliating condition?

None.

Telogen effluvium is, in most cases, not permanent. Your hair growth cycles just got screwed up, so the way “out” of it is to wait for them to un-screw themselves up. The minimum amount of time I was told this would take was 6 months. In the meantime, I took biotin (SO HELPFUL. NOT.) and was told that if things got really bad I could add in some Rogaine. But only as a last resort.

Meanwhile, my hair continued to shed. Someone coming over to our house in May looked at our carpet and asked if we had a dog. Yikes. I started to realize that I could no longer wear it up in a high ponytail – the patches of missing hair became too obvious. Instead, I learned the beauty of the low ponytail – the ideal hairstyle for those of us with thinning strands. You really only need a small amount of hair to cover the entire scalp if you’re careful.

It was bad. It was hard not to panic – it had only been a few months and I felt like I had already lost so much hair. How was I going to last my requisite 6 until I could get some back? It also wasn’t lost on me that 6 months, AKA the moment when I was, theoretically, to have the least amount of hair, happened to coincide with my sister’s wedding. Cool. I could be immortalized forever in wedding pictures as the half-bald, diabetic freak.

And of course, because I was losing so much hair, I couldn’t bring myself to lose anymore, so I refused to get a haircut. My hair got crazy long, which basically just meant that the strands that were being deposited in the shower, on the carpet, on the sofa and pretty much wherever I went got longer and longer.

In retrospect, as I think back on it, I think my hair loss is the probably the main event that pushed me to do the clinical trial, (more on that next). I had lost so much control over so many aspects of my life, and electing to do a clinical trial felt so badass, at the time; like such a “take-back-my-agency” type of move. (Of course, it turned out essentially the opposite of that, but that’s another post.)

In the meantime, though, I want to tell this particular diabetes substory to its conclusion, so I will break my narrative structure (which at this point is still hanging out in about April 2014) and fast forward to the present. In early September, for the first time, I was able to admit that, holy crap, my hair loss seemed to be slowing down. It was one of those things I waited quite a while to say out loud, because I didn’t want to say it if it wasn’t actually true, but at a certain point Stefan, out of the blue, observed that the amount of hair he was wading through as he went about his day to day life in this apartment was shrinking. And occasionally I could run my hand through my hair and I wouldn’t come out with like, 900 strands.

And so, two weeks ago, amidst doctors appointments and current stress about unknown health conditions, I took a break to get a haircut. I was so nervous the whole time that the lady was going to stop and announce that, you know, she really couldn’t work with someone whose hair was so lousy and thin, but she blithely carried it out, frowning only once towards the end as she tried to style my hair.

“It’s very frizzy at the top,” she said, “I’m sorry.”

She pointed to a ton of short, soft hairs at the top of my scalp that she was desperately trying to get to lay flat.

“See, you have all this baby hair that’s grown in on your scalp here,” she went on.

I looked.

BABY HAIRS, MOTHERFUCKER!!!!!!!!!

My hair was growing back.

My hair is growing back.

It was the best news she could have given me. I think I hugged her.

Let’s all say it again: baby hairs, motherfucker.