Friday, June 27, 2014

The subject of lupus hair loss: out in the open works for me!

One of the little girls in our neighborhood has, what I consider, a bad habit. She likes to whisper. And tell secrets. And it drives me crazy.

She'll knock on our door, and politely ask Deirdre if she can come out and play. Deirdre will say that she has to ask her mom, and before I can walk over to the door and say yes (or no), Neighbor Girl will lean over to Deirdre and start whispering something in her ear. I'm sure she's not saying anything of consequence, but I imagine that she's saying, "If your mom says no, we'll string her up by her toenails" or something equally as devious and disrespectful. Neighbor Girl does it when they're outside playing with other kids, too. Regardless of how many little girls are playing, Neighbor Girl will inevitably pull Deirdre aside and whisper something to her. It's awful. The other little girls always feel left out, and almost shunned. I've explained to Deirdre that whispering is simply inconsiderate, and she's learned to tell Neighbor Girl to just speak up so everyone can hear. I've also made it a neighborhood rule that at our house and in our yard, there's no whispering. It makes people uncomfortable, and you're always leaving at least one person out of the conversation. If you can't say what you want to say aloud, maybe it shouldn't be said in the first place, right?

I think this principal may be one of the driving forces behind my eagerness to talk so openly about lupus. I would much rather get it out in the open, then give people the chance to secretly wonder (or talk) about what's happening or why. I remembering feeling this way at work, almost immediately after being diagnosed.  I preferred to be open about what the disease was and how debilitating it could be, rather than keeping it hidden. That way, when I missed work, had doctor's appointments, or was feeling ill, there weren't secret conversations about why. I'm sure there was still talk, and I personally (and probably, mistakenly) tried my best to push through the illness (which deserves a separate blog post of its own!), but I felt that by talking about it, I'd at least encouraged honest and open conversation.

I find the same to be true with my current bout of hair loss. The hair is continuing to fall, with increased intensity, I'm sorry to say. I have yet to have any bald spots exposed, so right now, I have a nice, even layer of hair over my head - thin, though it may be. And although to the naked eye, no one would guess that I'm experiencing hair loss, I find that my face takes on a slightly different look, because my hair is so close to my head now. (Those of you with hair loss - I'm sure you know what I mean!) Many friends and family say, "Is your hair shorter?" "Did you get it cut?" They can't figure out what is different, just that something is different. And that's okay. I usually take the opportunity to explain, simply because a) it's an easy way to briefly touch on lupus symptoms, and b) because as the summer progresses, and my hair loss progresses, I can continue to openly talk about it, thus eliminating the whispering, wondering, and secrets. Don't get me wrong - I'm sure that happens, too - but I'd just prefer to have it out in the open. I think it encourages questions, comments, and truthfully, compassion. Every third person I've met has experienced hair loss - and I'm always game to swap tips. It sure beats feeling left out or ostracized because people feel compelled to whisper about it.

So if you see me, feel free to ask how my strands are hanging in there. It's certainly top of mind for me...no pun intended!

11 comments:

Debbie said...

Before I was diagnosed with lupus and kidney disease, my mother had been asking me, over and over again, if I had dyed my hair to lighten the color. It really exasperated me, because I would never do that to my very thin and fine hair. Once I was diagnosed and on prednisone, it began to fall out for real, and I realized what prompted her questions.

Anonymous said...

Was diagnosed with Lupus when I was 27, lost a significant amount of hair. Well, it all came back, but curly. I'm 63 now, doing very well and still have curly hair, although now gray.

Love your blog. All the best to you.

Esther Guy said...

Thank you for sharing this. I lost half my hair when I was diagnosed with lupus. I now have what looks like a full head of hair again, but every time my hair starts to fall out a little, I get very nervous and self conscious. Your blog encouraged me today. :)

Anonymous said...

Does the hair fall always stop at some point? Mine has been falling out slowly for over a year and a half.

Carmen Metodiev said...

I have always lost some hair but I don't know if I am loosing more now due to the meds or I am being more paranoid now. Did you ever try using vitamins for hair and nails? Did it work?

Sara Gorman said...

You totally know what I'm talking about, then! Thanks for sharing. Always good to hear from you,

Sara Gorman said...

I'd take curly and gray over thin and wispy any day! Thanks so much - and I appreciate your kind words!

Sara Gorman said...

I know that feeling well. You start becoming conscious of every strand that falls, wondering how many more will follow! I'll work on thinking of everything BUT my hair, if you do, too! :) thanks so much for sharing.

Sara Gorman said...

That's a great question for your rheumatologist or dermatologist. I think hair loss varies quite a bit from patient to patient, but you may be able to see personal patterns that emerge. my loss usually happens during a concentrated period, after I've been sick, and then stops after 6-9 months. I hope yours subsides soon!

Sara Gorman said...

I agree! It's always hard to figure out what's causing the loss and how much you're losing. I find that i'll wonder for a few months,"am i losing hair?", and then all of a sudden, either it will stop, or i'll be losing so much that there's no doubt that I'm losing. The latter is my current state. :( And I haven't tried vitamins, but if you search hair loss on my blog, you'll find suggestions from others who have. Some people find they really help!

Glenn Lowe said...

Hair loss can be off-putting for most people, especially those who are used to defining their features through it. But I really admire you for staying positive despite the situation you were in. It makes people around you become more open-minded and understand your struggles. Thanks for sharing!

Glenn Lowe @ Knight and Sanders