Confusion and depression. Anyone want to share their journey's ups and downs?


For those who haven't read my other forum posts, I am a young adult with extensive alopecia areata (I would say that I am at about 60-65% loss now). I am currently at month 7 of dealing with my alopecia areata.

I have tried and stopped prednisone (1 month course), and other than the horrible side effects, I have not noticed hair growth.

I have been getting cortisone injections since early February, every 3 weeks, and there have been a fair number of regrowths.

I am potentially about to start a new medication prescribed by my dermatologist, an oral liquid steroid that you take once a month (name is unknown for now, I haven't picked it up from the pharmacy yet). Not sure if I will take it, will have to research it first. I will probably add another forum discussion tomorrow once I know the name.

As great as the regrowths have been (seriously, I am really happy for regrowths!), the fact that my losses are still at 100-200 hairs every day is really upsetting. I am so confused, and although I know that keeping a positive demeanor with a "you know what, it'll be okay" attitude is what will make my body stop being so anxious, it's way easier said than done.

I don't think it is coincidental that the first spot I got back in January coincided with a traumatic family event, and to be quite honest, I am not so surprised that the hair loss is still so bad because I am constantly stressed, anxious, nervous and sleepless due to said family issue (my older brother has a genetic heart disorder, and since January, there have been quite a few incidents that have happened... as recently as 3 weeks ago.)

I know what I SHOULD be doing - making sure that I am healthy in every other way, happy, reduce my stress, etc and I do do things to aid my body, but it is so hard sometimes when I think about my brother, you know? So I can do all the yoga, therapy, organic eating, etc in the world, but at this moment, I still get so stressed and upset.

With my hair loss being at some weird state of regrowth and loss, I decided to purchase a fancy schmancy wig since I don't see my hair loss slowing down for a long while. If you are in NYC or are coming into NYC, I really recommend Bitz n Pieces. The service was amazing, the people were so comforting and nice, and the wigs feel amazing. Incredibly expensive (mine was $2200) but the owner of this salon makes wigs for everyone from chemo patients to Cher so I figured hey, might as well go big and get a wig that gives me perfect hair every day.

I know I am blessed to have an amazing support network, with really good doctors, therapist and general help, and I should be so grateful. But I am still just so sad about this all. I am not in a place of acceptance yet. For example, I do not see myself mentally ready to shave off what little hair I have left. I cry every time I see handfuls and gobs of hair. I feel so ugly even though all sorts of people compliment me everyday. I feel shallow and guily when I feel sad about my hair loss, because I technically am healthy in every other way while my brother has a heart problem that had few solutions or treatments these days. I feel hurt when people say "it's just hair!". I feel angry when people diminish my alopecia which we all know is at least some part an autoimmune disorder, and say it could be worse... I could have actually been sick.

I am confused about my emotions, and as a person who had a major depression episode years ago, I am scared I might go back into a depression even with all my support.

All in all, I am totally on a really wacky roller coaster ride, and I have a lot more to go, don't I?

What are your stories/what has your trajectory been like?

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I was lucky in a sense that my hair fell out very slowly and in a way that I could always hide the hair loss...I also used to have a LOT of hair! After about a year and a half of it falling out, I finally decided to just take the plunge and shave my head and be done with it. I was so sick and tired of shedding CONSTANTLY that I just didn't want to deal with it anymore! I (like you) went out and bought a beautiful, expensive wig and it was the best $2200 I could have spent! It looks just like my hair did before it starting falling out and I had to cut it short, I love being able to wear it or not wear it. I will either wear my wig or a hat when I go out, I have yet to go out bald, but that's just me :)

Once I shaved my head, my stress levels dropped considerably...I didn't even realize how much I stressed about it, until it wasn't there to stress about anymore! I still deal with stress (I have a 2yr old and 4yr old and suffered from post partum depression after my second), but it's way more manageable.

I also had allergy tests done through my naturopath and follow a gluten free/dairy free diet now...and my hair is slowly growing back. I actually didn't think that my hair would ever grow back (I have ophiasis pattern, which from what I have read has a low regrowth rate), but surprisingly I have hair growing back on my arms, around my ears and one of my eyebrows is even filling in. Who knows what is causing the regrowth (less stress, diet, luck!?), but it's there.

I don't know if this helps at all, but I really have just tried to keep a light, positive attitude about the whole situation. I understand how you feel about people saying, "at least its only hair!", it used to piss me off, but now I realize that they were probably just uncomfortable and didn't know what to say. It is what it is...I am healthy in every other way and I am lucky that I have a lot of amazing friends and a husband who are super supportive.

Good luck!! And take care :)



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