Dealing with the unpredictability

Hi All,

I've been having a hard time lately with my hair and the emotions that are tied with it. I've had Alopecia Areata for a little over a year now. It started in April of last year as a small dime sized circle and grew to about the size of an egg/lemon. I started getting cortisone shots which stopped hair loss immediately. But of course that was only temporary. Through the summer I still dealt with covering the spot but no hair loss, and it had started to grow back. Come October anther spot in the front of my head appeared. Treated it. it stopped falling out. Of course the back of my head(original spot) started shedding again. Shots didn't seem to help so I tried Plaquenil. That also seemed to halt hair loss immediately. I had a good four months of complete re-growth and no active areas. I thought I was out of the woods and could finally put this behind me. Well here we are again, and the back of my head is very active. While it isn't happening in circular patches the whole area is just thinning around the initial spot. I've decided to forego treatment as I do not believe it would be anything but temporary, it also takes time away from work to go to appointments, and it's money I'd rather be spending elsewhere. So here I am, crossing my fingers that it will soon stop falling out and I won't lose so much that I have to start wearing a wig. I'm angry. I feel like I'm in an abusive relationship with my hair. It causes me so much anguish fretting over it, and then it stops falling out and I have all of this hope, only to fall out again. It's hard to accept things and move on when you're constantly back and forth. It's caused a resurgence of my anxiety and I've developed some rather troublesome self esteem issues. I'm smart enough to get help(therapy) for these issues and feelings that have come up but of course I'm still struggling with it. I see so many beautiful people on here who I think look great without their hair, but at the end of the day I'm just not okay with the thought of my hair being gone. My hair makes me feel pretty more than any other feature. My hair envy is out of control as well. My boss has GORGEOUS model hair and I want to throw things at her whenever she complains about her hair(I don't actually throw things). I realize this is turning in to more of a frustration rant than a post, but I just would like to hear from others and how they have learned to deal with the coming and going of your hair. At this point, even if my hair stops shedding and comes back in the missing areas, given the last year my AA will most likely become active again. Some days I want to shave my head so that I can just move on. Anyhow would love to hear from you all :)

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Permalink Reply by Elaine on June 22, 2013 at 3:19am

I read your story and felt compelled to write. This is the first time I've talked about my auto immune disease in a public forum.
Your story closely mirrors mine with the exception of I don't know your age. I am currently 57.
I found my first spot, about the size of a loonie (I'm Canadian), on Christmas Day, 2000. I thought it was a joke at first but it was bald-bald, stripped of hair and I soon realized, I had a problem. I didn't take it too seriously at first because I have never known anyone with Alopecia. Surely the hair would grow back.

I went to my doctor and found out I had somehow triggered Alopecia Aerata and at a time in my life where my stress level was at its highest. I worked in a fast-paced, demanding career.
The spots would start off small, then chain together, and the next thing I knew, I had just a trim of hair along my hairline - the rest, gone. I wore hats, baseball hats, and wigs. Synthetic, which was a cheaper choice, but a mistake in my opinion. You're already going through trauma - why look corny to boot? Alopecia definitely impacts romantic relations, and poses extra challenges for single women (I can't speak for men). The younger the woman, the more I believe it would impact her.
I began noticing all the advertising for hair, and I admired beautiful hair wishing it was mine.
At first, I sought out all types of treatment. I did those crunchy little injections, and grew hair in that particular injection site, then the hairs keeled over and popped out of their follicles.
I tried Rogain. P-U.
I tried brushing my head vigorously.
I ran an ad looking for women with Alopecia, and discovered a wide variety of women who had experienced extreme stress in their lives. We all talked on the phone but most lived busy lives, and we never met.
I cried wondering why me? But then, why not me?
I laughed at the absurdity of the disease. Did the universe want me to become a monk?
Anyhow, along the way I explored all types of cover ups and in that, empathy for the man with the combover. I also began pencilling in the areas, or using a dark eye shadow to hide the spots. I have chestnut coloured hair.
Eventually, I went into a specialist. It took me almost three hours to get to his location in rush hour, and he presented a new treatment. I saw the pictures, the results good and bad. The bad was bad. And I asked "What's the success rate?" He said 50/50. I asked "What's the success rate if I do nothing, I forget about it and go natural?" He said 50/50. I said I was going natural, and he left me sitting in the room until I realized the appointment was over, got up and left.
I decided that day that I was going to say to hell with all the specialists, injections, lotions, potions and notions...stop worrying and I was going to go natural. I would do nothing and start laughing. I would answer the question I could not answer when entering my journey with Alopecia. "What do you do for fun?"
The specialist says it's not stress, but I disagree, and I'm going with my gut instinct, so I just simply shifted the way I thought about it. I quit worrying, accepted what it was, explained it to those close to me, and after about a year, my hair began growing back. It was unexpected. The entire process took about six years. Seems like it's a big concrete wheel that gets rolling, and is slow to stop as well.

Anyhow, I recently experienced a collision of career burnout and menopause. Super stressful times, and while I had my hair for six years, again last year (2012) I noticed a spot. Small at first, then another, now chained together.
While I've made drastic changes to eliminate stress in my life, it's too late for this round. I'm into my makeup tricks now, and hear there's a new wig spot in my area. Here we go again only this time, I'm going right into the natural state of mind, and laughter. See if it takes six years to get my hair back ;)

Permalink Reply by Tovah on June 22, 2013 at 4:42am

My Dear Katelyn:

You are in that ever going around circle of alopecia. You're quite a bit younger than me, so I will try to help in the way I can. When I started with losing my hair, about aged 14, I had never heard of alopecia. I don't know if it would have been better to start off with getting help right away or if it would have been the same result. Pretty lousy hair. It's been the bane of my existence, praying for a wind to not come up that would reveal all. It takes so much energy. Don't give up yet. This is a disease that we don't know what it will do. I have managed to hang on to my thin hair for over 20 years, but either stress or a new medication had it coming out in clumps a couple months ago.

For the first time in my life, I actually took the pictures and documented it in my blog, wwww.hautecurvywoman.com. I started a part where I talk about my alopecia. I always kept it pretty long so I could put it up into a big bun. I was now not even able to do that.

Writing is very therapeutic and this has helped me to write down all my frustrations. This is my 3rd haircut in 6 weeks, going shorter each time. Tonight, I was contemplating just getting the shaver out and being done with the whole hair business.

Has it gotten easier for me to handle? Absolutely. I'm able to laugh now when I ask my husband how many of my bald spots are showing. This is not in any way the end of a great life. I married the man of my dreams even with my thinning, horrible hair. I've traveled and lived the life I've wanted. There is no way that my hair will take anything away from my life and don't give it that kind of control.

On the other hand, like I said, this is new for you and you are young. Get to the best doctor that understands and knows alopecia. It's very rare for a dermatologist to know enough about alopecia.

Do whatever you need to do with your hair to feel you've done what you could to get to a place of acceptance. You never know...your hair could come back. It has for many.

You're a beautiful girl; hair or no hair, you will still be beautiful.

Let me know if I can help in any way and I am sending all good thoughts your way.
Tovah

Permalink Reply by Randy on June 22, 2013 at 7:35am

Hi Katelyn,
You remind me of my beautiful 18 yr old daughter (i know u r older). She has suffered with aa since about 15. For me, the unpredictability is a killer. For her, she might say, going through her senior year in HS - prom, graduation... - was worse. She was completely bald, but she did have 2 of the most gorgeous wigs available. Yes, they were expensive, but i would've begged, borrowed, or stolen the money if I had to. The wigs didn't make her feelings about her aa better, but they gave her back some of her lost self esteem. She also tried the injections and the situation was the same, grow back, fall out, grow back, fall out. Finally we went to the wig and gave the treatments a rest. Would u believe, her beautiful hair began to grow back on its own. Today, she has a full head of hair, but even so, i carefully put her 2 wigs away in the closet, hopefully never to need again but i (and she) know the nasty unpredictable nature of the beast. Good Luck

Permalink Reply by Sarah Lewis on June 22, 2013 at 8:34am
I have been suffering from alopecia areata since I was 16, 15 years a go :-/
I felt exactly the same as you. It would fall out, grow back, fall out, grow back and so on. I tried everything but no luck. A couple of years a go I started to colour in the patches on my head with a brown, liquid eye liner. It makes me feel less 'naked' without the bright white patches showing through. Obviously I have to wear head scarves over any large patches on the top of my head but at the moment they are on the lower half of my head. It has helped me move on a bit and get some confidence back. For some reason I now don't mind if someone sees the patches because they feel covered. I have accepted that this is something that I will probably always have. It use to destroy me but now I just get on with it. It is heart breaking when a new patch appears and when it starts to grow out of control, but I can't let it get me down anymore. Now it's just a part of me, I guess it makes me who I am! And now I don't stress about it as much, I find the new patches don't grow much larger than a few cm's. I have large patches over both ears which haven't grown back for over 2 years now, so they may not now but I just colour them in. My 2 yr old son watches me and tries to copy me. He has never known anything else! Good luck though and try not to let it take over your life.
Permalink Reply by linda carraway on June 22, 2013 at 10:16am

That's exactly what I did. I shaved my head. I 55 so I've been through this for 53 years. I was hiding with hats and scarves and I just got sick of the way I felt when I saw myself in the mirror!I realized its just hair! I wear cute hats when I feel like it but usually just go bare. I've never had anyone say anything mean ,they all think I have cancer. When or if some asks I get to educate them about AA. You are a strong beautiful women with or without hair. AA SUCKS But LIFE IS GOOD SO kick AA"S butt aside and live the beautiful life you deserve. Blessing's Linda

Permalink Reply by Shari on June 22, 2013 at 10:34am
I feel the same way so you're not alone! You didnt say how old you are, I'm 43, and my story is so parallel with yours. My AA Started 18 months ago with a spot in the back, did the shots, had regrowth and thought it was over. Exactly a year later new spot in the back, got shots, figured it woukd grow back and id moce on like last time....but then each week I would find new spots. It was nothing like my last experience and I'm up to 10 spots of various sizes now. Shots seem to help but growth is much slower than the last time. Like you I have my moments of hair envy, I hate spending money on shots and taking time off work every few weeks for dr appts. I spend time wondering if it will ever end! If my AA will go away or if I will forever keep finding spots until my head is a patchy mess of different length hair. I'm a busy full time working mom of two daughters and don't have time to spend on this. Most days I force myself not to focus on something so superficial as hair but as you said, I see women everyday with beautiful hair and think about how scared I am that the wind will blow and my secret will be revealed. It's a hard disease and this site has me helped a lot! Thank you for sharing your story because it helps knowing we are not alone!
Permalink Reply by Michjo57 on June 22, 2013 at 11:43am

I agree about the medication. I was on Griseofulvin, the side effects on the liver were too much to think about. What, I get my hair loss stopped but I need a liver transplant down the road? No way. It's a crazy disease or whatever it is. I know it is autoimmune related.

I am also doing some essential oils for the emotional aspect of all this. It certainly helped calm me down. I was so emotional when this all started. By the Grace of God though, I have learned to accept it. Going camping today with my scarf on. Wear a wig to work everyday. We only have one life on this earth and we can't let hair stop us from living. There are beautiful wigs out there now. I worked in Oncology for 10 years and never thought twice about the women having to wear wigs. It was just part of my work life. I think we are harder on ourselves about having to wear hair, than we need to be. Nobody notices. We are just more aware of hair now. Just take time and keep the faith! You can overcome this! God Bless!

Permalink Reply by Cinder B. Rand on June 22, 2013 at 11:58am

Dear Katelyn,

Wow, I feel your frustration. I think what you are feeling is so right-on for what we all go through. I agree with you not to do the treatments. Some of them are painful, cause other damage to our bodies, most of the time do not work and oh yes…expensive. It is ok for you to rant and have all of the feeling you are feeling. You need to go through this at your pace. You have an amazing support system here with this site and you will be surprised how many people you will meet that have this. I am always amazed. I live in Chicago and I must tell you I meet people all of the time. I still wear pieces but I am very open about telling anyone that I have this. In the beginning not so much (now for myself a little over 6 years). I have Alopecia universalis and although it was a very hard adjustment we as human beings are amazing and we do adjust to what we must adjust to (wow that was a mouth full). I will tell you I never have a bad hair day anymore. For myself and around my very close friends I have become comfortable about not wearing my hair all of the time. I do hope for you that your spots all come back full and beautiful and you never have to deal with this. But if you do have to deal with spots and more just know you have a wonderful support system with so many wonderful people that will understand (us). None of us want this but I will tell you for myself I do not want my hair back if it was to come back and then fall out again. I have seen this happen to a number of people and that this seemed worse to have to experience the loss again. But it is something we really do not have any control over. I can only talk from my own experiences but it has brought to me a lot depth that I did not realize that I had within side of me. I am not going to say that I am happy that I have this but…I sure am not going to say that I am unhappy. I know that there is a lot more to us then our hair. I had great hair and people use to stop me on the street to tell me so. Well now every day I just wear different pieces and like I said I look different every day (if I want to). So go crazy, write a story, go to groups, don’t go to groups, rant, rave, cry laugh…it’s all good. I am not sure if I answered anything for you but I hope that maybe it helped just a little bit. You look lovely in your picture, with or without hair. Hugs and Peace, Cinder

Permalink Reply by Teresa Cox on June 22, 2013 at 3:36pm

It is devastating to lose one's hair..I know mine is gone. Over the years I have learned that it is not our hair that defines us but the life we live and how we treat one another; which is the basis of humanity. When I first found Alopecia World and saw the many pictures of all of the bald beautiful people here; I felt pretty good and I hope this will happen to you. You are beautiful with or without hair.

Have you considered wigs? There are many out there that are so beautiful and none will be able to tell you have one on. there is a site called Wigs by Patti's Pearls and she is wonderful and will customize your wig(send her your head measurements); she has training videos on how to measure your head, how to take care of your wig, etc. It's worth checking out this site!

I f people stare at you, well you can always yank ( not too hard) off your wig and say "Make a wish" and either they will laugh, pee on themselves and faint or just run... A little wig humour for you! IU found a sense of humor helps the mind and spirit!!

But there is a grieving process that you do go through when you lose your hair and never feel guilty or that what you are feeling is wrong, because it isn't. Give yourself a chance and remember you are not alone! there are as I think you have found out; are many folks on this site are wonderful and can help you. Take care of yourself and do check out Patti's Pearls.. ithink youw ill be pleasantly surprised!

Permalink Reply by Emily on June 22, 2013 at 4:59pm

Katelyn,
Losing hair is horrible. It just sucks. And I am sorry. It is so frustrating. Your journey sounds a lot like mine. My alopecia areata started when I was about twenty-two. Just like you, the patches were relatively small, but they got bigger. I could always conceal them, but I WILL NEVER FORGET HOW I FELT WHEN I FIRST VISITED WWW.NAAF.ORG. I was in total shock. The condition was new to me, and the lump that formed in my throat pretty much hasn't left; today I am 34. The patches have come and gone, and I have never had to wear a wig. Instead, I dutifully put my hair back in a low bun pony tail and always check the mirror to make sure that the "ugly" spots aren't showing. It SUCKS. I realize now though that I have had it pretty good. All of a sudden, the hair is coming out aggressively. More than it ever has in the past. I can still hide it, but those days look like they might be numbered. I don't want to wear a wig. I want someone to make it stop falling out. Being without hair and wearing a wig doesn't sound like fun. Hair is not only pretty but it feels wonderful.

I wish your hair would stop falling out. I think it will.

Going to treatments and seeking help from a variety of medical professionals is draining. I know. I used to spend a lot of time doing it. I don't anymore. For what it's worth, once I stop nursing my four month old, I am going to begin using topical anthralin cream. Have you tried it? I prefer it because I can do it at home rather getting steroid shots from my dermatologist where I always wait at least 45 minutes beyond my appointment time....with two kids under two, this is really not an option for me. If you haven't tried the anthralin, you might give it a go. It is a tar like substance that essentially makes the skin react as if you have gotten poison oak or something. Uncomfortable? Yes! Effective....maybe?! Hard to say.

Just curious: did you ever eat restrictively? I did for years. I know that I went in and out of anorexic periods. That adds a whole additional layer to this condition. Most people with this confusing condition can't help but wonder if they are doing something to cause it. Well, in my effort to maintain control and to reach some conventional ideal left me with a kind of misery I wouldn't wish on anyone, ever. I hate that my patches today could be a result of my obsessive eating years ago. Not fair.

With all of this said, I am now happily married with two of the most beautiful kids on the planet. My husband is amazing. It's not every day that I suffer. Like you, some days are great and some days are really hard.

I wish you strength and peace. You are not alone. Cry when you need to. Don't let anyone tell you it's not a big deal. It is. What you are going through is not fun. Hang in there. I hope your hair stops falling out.

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Permalink Reply by Denise on June 23, 2013 at 1:22am
Katelyn, my heart goes out to you. I have not been on here in a while. I have been an alopecian since April 2009, I was working nights which I still work shift work. am and my hair burned and started falling out. I will never forget stuffing hair in my pocket and going to the washroom to realize omg my hair which was longer than my shoulders was falling out. I said not a word, went back in and finished my shift without barely moving at all.... fast forward a wk it was falling out in droves.....cortizone injections which made me so sick, a yucky nauseated feeling all day and they flipping hurt.....needles in head just not right, my hair was pretty well all out within 3 wks , so had to shave it , comb over was not working, hats to hide it, ya like that worked. I remember sobbing on way home after she shaved it off. I had bare spots I never realized I had, all over, today I have bare spots that have ever grown back at all , except white odd hairs with a few small areas of black fuzz that never grow long, they fall out when stress is in my life. WHich in my job is pretty much all the time.
it is bald for the most part I have no eyebrows ( I wear eye brow wigs I love them ) no one can tell....... and barely any lashes. My hair grows in spots in shadows and falls out.....

If I was to be as honest as you were when you wrote this , I would have to say I am angry still. I do not understand, a tiny part of me waits in case, but then even if i gently touch my hand over my head the shadows fall out. So I wear wigs, my dilemma now is , I have some almost all the same, as I try to hide I have ALopecia in public. I wish I could just dig deep enough to find the courage to wear what ever wig I chose to and not feel uneasy, insecure, always wondering can they tell, what if it rains, what if the wind is strong, what if someone hugs me before I can hug my arms above theirs they might move my hair OMG the fear of that one......... I act like I am so ok with it, when in reality there are days it is like it is the first day all over again.

I never had the patches grow over like you did. I would be too afraid to be in the bank in line and then all of a sudden whoooopp the swoosh of falling hair......ya , no........

My fear now is can they tell it is a wig? am I pretty still , am I still likeable looks wise. I know BEauty is inner but , it is a struggle...

SO if I can say anything it would be that , each day, be thankful for all the good in your life and I agree with all the other posts , their words were all what I feel inside. Yet told in diff ways.

ALopecia is a hard journey, some good days , some really bad inside battle days.......
I am still figuring this all out. But your right where you need to be.

:) there is no magic wand , but there is alopecians who understand....
Denise :)
Permalink Reply by farrah on June 23, 2013 at 2:18am
I thought I was the only worried about changing wig styles. I have a coupla of very natural looking human hair wigs in a lovely mix of dark brown, auburn and yellow gold. Beautiful! Company has discontinued this wig. I have bought similar color, but have not been able to get human hair OR the exact mix. I keep wondering what I am gonna do when these two wear out or just look too ratty to wear any longer.

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