How to deal with setbacks when dealing with AA?

I've had AA for over a year now. Lots of downs, some ups. Lots of regrowth, lots of hair loss. A few months ago, maybe around September, I thought my AA was on the way out, because I had all these new hairs, and no new patches. Woo! I said to myself. So that, coupled with my HH wig, kept me pretty cheerful and positive. 

My growths stalled around Dec and Jan, but my dermatologist said it all still looked very promising, so I stayed positive and ignored my AA as much as possible - just went about, and lived my day as well as I could. 

I can't really figure out if anything changed between the summer and now, but I feel like I've fallen back in a mental, emotional and physical hole again, similar to my terrible coping back when my AA first came about. Seemingly over night, I woke up this morning with a lot of loss and some new patches - a lot of my eyelashes are gone, a lot of one of my eyebrows is gone, and there's about two-three faint patches developing. The most unsettling is the one straight on my forehead hairline. And although every time I was my hair, I see lots of loss... only very recently have I seen my regrowths falling out too, which has made me even more upset, and emotionally compromised. 

This "resurgence" of AA has totally messed me up emotionally. I feel very terrible and gross, for lack of better words. I feel like I must have done something wrong, even though rationally and logically I know that this is the nature of AA - unpredictability. I just feel so upset, and unhappy. Kind of like the floor under me is suddenly gone. 

I just don't know how to deal with this - I feel like I can't even process, so I can't figure out how to move forward from this. 

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Permalink Reply by Judy Woolley on March 1, 2014 at 4:37pm

I totally and utterly understand how you feel.  I have had this happen about four times over the last 5 years.  This time around I had my eyelashes grow back and quite a bit of hair but away it went again just in the last couple of weeks.  It is depressing and soul destroying and you feel like "why me" along with a lot of other words that I won't offend people with.  But you have to think well it's only hair, if you have your health, the love of your family and friends then that is what you have to keep focussing on.  If you can go for long walks and feel the breeze in your face (yes I know sorry sounding a bit corny here) but it really does lift your spirits.  

It is hard to keep positive but go with the flow, enjoy every day and try different things if you can.

Permalink Reply by Marsha Lampert MBA MS on March 1, 2014 at 5:14pm
I thank God daily nightly that I have a large diverse collection of wigs that I happily wear 24/7. Even to sleep swim hot tub in etc. I'm only wingless in the shower or bath. I've been a 24/7 wig wearer for over 4 yryears y
Permalink Reply by Shelly on March 2, 2014 at 4:23pm

I understand the roller coaster you're on.  Aloepcia is so individualized and unpredictable.  It can affect self-esteem like no other, and I'm sad you're experiencing it.  I have found that doctors don't really know how AA is going to affect each individual either.  

I hope you find a network of coping mechanisms/support.  This site is a wonderful way to feel supported, learn information and be understood and not have people feel sorry for you. Please realize people who don't have alopecia are trying their best to help you, but it might not be enough (because they really don't understand what you're experiencing).  

Keep trying to take each day, each experience as it comes.....otherwise things may seem hopeless and overwhelming. Believe in yourself, your alopecia is a medical condition, not who you are!  

My best wishes to you!

Permalink Reply by Ericka on March 2, 2014 at 4:45pm

Just reading your post I can feel the catch in my throat.  I remember those days. Hang in there and rally your support group. It will be a roller coaster.  I am in the process now of writing my book talking about the roller coaster ride of living with alopecia. It has been a solid 12 years. Trust me, I had to chuckle several times while writing to keep from crying.  

Permalink Reply by femmemuscle on March 3, 2014 at 9:12pm

yep, i'm encountering another setback.  Right now, i'm sitting in my bedroom, looking at the 3 wigs i've adopted:

Maple (curly long lacefront)

Amber (straight long (layered) lacefront

and Troy ( yeah, named after the famous football player. Troy Palaumo ), it's a long wavy lacefront wig.

I'm learning to stop calling them wigs, and am now using the word "Prosthesis"..

I joined hair forums that teach ladies to grow their hair.  Many of these ladies are genetically gifted and are able to grow hair from a Big Chop (< 1/2" of hair) to Butt Length in a year. They encouraged me that i can do the same thing no matter what hair type i was, or culture.  I believed.  Looking at their hair journeys i truly believed that i could be just like them.

I'm in a place where the populace is mostly hispanic.  They seem to grow their hair without any effort whatsoever.  Thanks to those hair forums, i thought, yeah.. i can grow my hair that long, too..

There was one minor detail that i have overlooked.  The ladies on the forums or in my location don't have AA.  I grew my hair to a certain length.  But soon realized, that even though i had growth?  i kept getting repeated bald spots.

My SO thought for a while that i was actually pulling my hair out.  One day he would see a head full of hair, and 6 months later, he saw a head full of "holes".  Specifically the right temple (a palm sized tear drop). The Parietal region (palm-sized bald spot near the crown), and a large dollar-sized area above the left ear.

I've learned to accept the fact that i have alopecia.  but it doesn't stop me from trying, experimenting, or learning.  I don't want to give up on my hair journey until i have tried every possible NATURAL treatment i can think of.

I have to say that some of these natural experiments can be disastrous?  Like the onion/garlic juice treatment. I tried it on my scalp by itself.. well my hair dried up in these areas and broke off due to not using a moisturizer.

Okay, so i poured the onion/garlic juice in an oil base and used it 2x a day.  Needless to say, my SO wasn't happy at night, and there's no telling how many people at work think i smelled like a perpetual pizza.

So i've pretty much just ditched the onion/garlic method.

I still look over at those "Prosthesis" of mine and wonder.. (sigh) will there ever be a day that i won't ever have to use them again?  to be honest, i think that day will never happen.  But i can still hope.

Permalink Reply by Marsha Lampert MBA MS on March 3, 2014 at 9:15pm
Why not think of your wigs as your new hair ? Or new for you hair ?
Permalink Reply by Marsha Lampert MBA MS on March 3, 2014 at 9:23pm
I have embraced wigs and perceive them as my new hair and have fun experimenting with barrettes clips ornaments etc and I wear wigs 24 7 even to swim and sleep in so as to not have to see my near bald head

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