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Caught Off Guard
Since I haven't shaved my head in several days, I was able to notice that my alopecia is active and I have several new spots that are completely bald and a large patch on top that is almost gone. I have to admit that I'm a little bit more upset than I probably should be, mainly because it caught me off guard.
After 36 years of living with alopecia, you would think I'd know better than to get upset when my hair starts falling out again. After 36 years, you would think that I would have already shed all the tears for this damn disease that I could shed and made my peace with it - and to a large extent, I have. I got through bullying because of alopecia in school, I've gotten used to the stares and the pointing in the general public, I've gotten used to being constantly asked if I have cancer, and I've gotten over being in relationships where my partner told me he didn't want to be seen in public with me unless my head was covered up. And in those 36 years, I've also spoken out and written about alopecia awareness, shared my alopecia story with other alopecians, and discovered my bald family, who I love just as much as my biological family and will understand EXACTLY what I am sharing right here.
And yet.
And yet despite all the ups and downs that come with a lifetime of living with alopecia, here I am, shedding tears for something I should have gotten used to a LONG time ago. I know intimately how isolated new alopecians feel when they see their hair washing down the drain in the shower or coming out in clumps in their combs and brushes. I know intimately how upset they must be when they look in the mirror and see giant bald patches where hair used to be. I know how isolated they must feel, because right now, even though I know that I'm not, I feel very isolated right now as I try to calculate exactly how much of my hair is gone. It may sound irrational AF, but it's something ALL alopecians do at some point or another. If I had to make an educated guess right now, I'd have to say about 40-45% of it is gone, with another quarter of it on its way out.
As my best friend Erricka Mystorie likes to say, even iron breaks eventually. However, there's no use crying over spilled milk, so I'll give myself a little bit of time to be human and be upset, and then I'll clean my face up, grab my razor, and keep doing what I've been doing, which is shave what's left off, and keep the party moving. You see, I'm a survivor, and if alopecians aren't anything else, they're survivors. We have to be to survive living in a society where people are judged by how they look before learning about the character underneath the package.
For the record, I didn't write this because I'm looking for pity, or even because I feel sorry for myself, because neither of those things are true. I wrote this because once every few years, alopecia reminds me that I'm human after all, and that it's okay for me to be upset about it sometimes. Writing about my personal experience is the catharsis I need to get everything out of my system so I can move on.
If ANYTHING comes out of this, it is the hope that maybe THIS time, alopecia will be kind and take ALL of the hair that I've got left away permanently after all this time. From my point of view, being AU is infinitely preferable to secretly getting my hopes up that maybe - just maybe - if I forget to shave, there aren't any new spots. Oh well, a girl can dream, can't she??
***I shared this yesterday on my Facebook page, which is when I actually had this experience.***
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Comment by JeffreySF on April 3, 2018 at 9:26pm
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Hi Kat,
Thanks for sharing this. Many could benefit from your words.
Thanks for being the wonderful woman that you are!
Thanks for being my friend!
Thanks for all the great times we've shared together!
Love and hugs!
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Comment by hopeful daisey on April 6, 2018 at 1:12pm
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You have every right to feel whatever comes up for you around this. Being vulnerable is the strongest thing a human being can do. Thank you for sharing and keeping it real. It sounds like you are a support to those around you. You deserve to be supported as well. You get to have your experience and still be the awesome person that you are! May you be gentle with your process this time around and hold yourself in the highest of LOVE.
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You've been through so much more than I have with alopecia, since I didn't get it until I was an adult, but your post really conveys the frustration and loss that seem to never completely go away even if you have moved on and relegated alopecia to the background, where it belongs.
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Comment by RJ Martinez on April 6, 2018 at 1:55pm
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Thanks for Sharing..
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Thanks for sharing this. I keep hoping it gets better and I come to some acceptance. And then I go pick up a new wig and it just devastates me that somehow my hair didn’t come back. I think we are all right there with you today.
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Comment by Renee on April 6, 2018 at 10:48pm
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I think we can develop a bit of PTSD.
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Amen, sister!!
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Comment by kitty on April 7, 2018 at 11:31am
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I am so sorry for what you are going through and yes, every so often, it is fine to feel badly. This disease is tough. But you are doing a good job of keeping yourself going and I admire that tremendously !!!!
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I completely relate to what you are saying. I suffered with AA since I was 27 and at 54 it turned into full blown AU. After doing all of the usual things that brought my patches back didn't work and the hair loss accelerated I decided to take control and shaved my head. That was 8 months ago and I have absolutely NO hair or hair growth. The reason I go into all of this is to say you are right! Dealing with the anguish of watching our hair fall out in clumps and then watch it go down the drain can be so demoralizing and depressing. Now that I have no hair, I shower in peace, wake up in peace and ride with the windows down in peace! I do still have moments of denial when I believe my hair will grow back, but then I think about it and wonder if that would be such a good thing. By that, I mean bringing daily stress back worrying every moment of every day, "will it stay, is there another bald spot, does anyone notice my hair is so thin?" What I wish for most of all for all of us, is a cure!
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We ARE with you, I have had alopecia for 42 years...on and off and then four years ago, universalis, I was told by a derm I would never get my hair back. Well I started 20 months ago getting hair. It is so slow, spotty, I wanted to grow my hair.... but last week I tried to get a hair topper, spent days looking at options, went back to the same derm only to hear, "good for you"... I went to that place last week, sad, searching for hair! Bought 2 new wigs yesterday... the wig lady was helpful when I brought up some of my silly worries about..."what if the wig is a different color from the white hair growing in"... It is such a roller coaster, yep I know it does not define me...yep my friends are helpful....and clueless... it is so hard and you are right, most of the time I am fine... All my support, I get it,
Here for you!
Rie
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