Replies to This Discussion

Permalink Reply by Tallgirl on July 23, 2011 at 8:35am

Mine happened at age 10, and my mother combed my hair back, to be held with a big clip, over the spot. I was dragged through tar shampoos, ultra-violet light treatments and creams (early 1960s)...and my hair grew in. The only stressor had been my mortal fear of singing in front of the class in fourth grade, chicken pox and some social strife in third. When alopecia returned in 10th grade, I got a half-wig, still pulling front hair over it. I started the shots, prednisone pills, and eventually a bigger shot of cortisone in the hip. Dents appeared whever I had the painful shots, and when an over-zealous substitute dermatologist (my doc was on vacation: she had only done six shots at a time) gave me shot shot shot up to 12, I was in tears, feeling like a dang guinea pig. When my hair started to spot in the front hairline, I had to get a full-coverage short wig, which I interspersed with my half-wigs (folks got me a long one for formal dances, but I wore the short one to school). This went on to age 20, at college, when the hair grew in AFTER I STOPPED TREATMENTS! Maybe it was the hormones and partying that made it grow. Wine??? I was enjoying being away from home at college, so maybe it was stress reduction.

Years of hair (ah, the twenties in wilder San Francisco!) again reversed in my thirties, when I married, had kids, worked as an art director, got a Master's Degree, put a husband through law school, and endured a mother-in-law (not). In my mid-thirties, I had been on birth control pills only a few weeks when the hair loss started again, so my doctor said to stop the pills immediately. Well, the alopecia progressed to AT by 40 (Friar Tuck! I scowled at the camera, and God, for my 40th birthday portrait in a too-bushy wig), then AU, then back to AT by age 48. A new dermatologist said if someone had this much hair loss, for many years, at such a late age, then shots wouldn't help anymore. Besides, insurance wouldn't pay for alopecia or wigs, and my ex had lost his job. So, I ACCEPTED my fate and bought scarves and wigs.

Now, some of the pressures are dead, some have moved out. I have had other pressures, but I don't let alopecia be one of them. I just buy the hottest birthday wig I can every year...synthetic...and I am back in college again at age 58. On vacation, I got a shaved head and even took off my hat in public. It's a learning...and growing (pun)...experience.

Take what you will from my story, and go read other stories. Just like young ones learn from elders and interns learn from bosses, you will get ideas from veteran alopecians. Go read achives and past blogs of people here whose attitudes you enjoy, and past discussions. All of these questions arise over and over, with new people who find this site.

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Permalink Reply by Karen Smith on July 24, 2011 at 1:37pm

Hi, Everyone's experience is different and this condition is totally unpredictable. Trying steroid shots since it is early in the condition is worth a try. It works for some people. You need to find a good dermatologist that can help, if it is worse call them. Losing hair is a big deal but you can be okay even if it all goes. I wish we could tell you what to expect but noone can. We are here to answer questions. Having a good wig on hand is reassuring so, I think that you should get one before you need it.

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Permalink Reply by Michelle on July 24, 2011 at 7:17pm

Hi AJ,
Being that your spots are still small I would go to the dermatoligist and start on the steroid injections right away. I too, started out with 2 quarter size spots towards the back of my head. I went through a few rounds of shots and the hair grew back. Unfortunatly, 20 years later the same two spots appeared as well as two more on my temples. This time around the hair did not grow back. It started falling quite quickly. I went from Alopecia Areata to Universalis. I have no eyebrows, nose hairs, arm hairs, lashes, etc.. Is your scalp really itchy? When my hair started falling, my scalp itched so bad it woke me up at night. You don't have to tell anyone you don't want to. I didn't start telling people until after I shaved the remaining hair on my head. Good luck to you and remember, now that you've found this site you are not alone.
Michelle

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Permalink Reply by Violet on July 24, 2011 at 7:32pm

Hi AJ. :) You ask at what point you are allowed or meant to freak out, buy a headscarf, etc....whenever it feels right to you. As this disease follows it's own course, so should you. I remember being in your position not long ago - do I shave my head, do I not? Do I wear a wig, do I not? Do I care if people know? I would ask the advice of everyone I could. And then one person who has had AA since childhood said to me...Do whatever you think is going to make you feel confident. That was sage advice and what I always go back to whenever I'm having a dilmena as to wear a hat, a scarf, or nothing on my head. And that changes depending on the situation, and that's ok. We need not beat ourselves up over this - it's very difficult and it's ok to feel differently at any given time.

I chuckled a little when I read that you laughed it off in public and then were distraught in private - not because the situation is funny, but because I can relate. I did the same, and still do at times. We want to appear strong and unfazed to our friends and family. But when I started to really tell them how I felt, how scared I was, how worried I was...I found that I wasn't alone and my family and friends wanted to be there for me. Sometimes it's hard for them to know how to help you unless you open up. Believe me, they want to help. I finally stopped saying "it's fine" and making jokes, and just said "I'm pissed off about this. I don't like it, I don't want it, it's not fair, and I am mad at the world." That awful phase lasted a few months, but by being open about it my friends and family were there to listen and to try to comfort me. I've moved past anger, thankfully. Not sure what stage I'm in currently but at least I'm no longer awful to be around. :)

You have every right to be here on this site. Again, I felt the same way when I first joined. At that time I hadn't lost as much hair as others so I felt like I wasn't worthy of support. Of course now, I've lost a substantial amount. But really, if hair loss is bothering you, whether it's one patch or total hair loss, you have the right to be here to receive support and give it. You never know who is reading your story and hearing your words and it's resonating with them. We often have far more of an impact on others than we realize. Sometimes just saying "Yeah I get where you're coming from" is enough to make both you and them feel better.

My early days of alopecia were distressing. After 3 months of losing more and more hair, I finally shaved my head and then wore a wig anytime I left my home. Then after 2 months, it began to regrow nice and thick, so I went without a wig most of the time, sometimes wore a hat. And then after about a month of regrowth, AA struck back with a vengeance and I've now lost about 60% of my hair and it continues to fall out. This is a journey - some of us deal with it faster and easier than others. There is no right or wrong. I've found that the more I am open about it with people, the easier it is to cope. It takes the "shame" out of it that so many of us feel (though we have no reason to be ashamed).

I'm glad you joined, and I hope you feel like you belong here, because you do. :-)

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Permalink Reply by Stella on July 25, 2011 at 6:38am

Hi AJ!

A year ago, i was diagnosed myself... I had a bald patch, and when i googled alopecia, i freaked out. Totally... Then I found this site, went through photographs, and I was thinking the same... I have no right to be here, its just a small patch. Well now, a year later, i shaved my head for the first time in my life. I ordered my first wig, and eyebrows, and Im learning to live with it. I lost almost all my hair, my brows, my body hair in last three months. Its been hell for me, but now i just d0nt give much importance to alopecia... I choose to tell people what is happening to me. And I decided, since im 24, that much more life is ahead of me, and no hair on my head is not going to stop me from living it. In my experience, alopecia is what you make it to be... And I think that what you are going through is normal, at least the same was happening to me.

Good luck,

Stella

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Permalink Reply by AJ on July 25, 2011 at 7:05am

Hey guys, thanks so much. As all of you have said, just knowing that this is something that has, and is, happening to lots of people is a massive reassurance - and to hear that everyone has a story and it's normal and fine to feel rubbish and scared by it. But I can see from so many of your interactions on the site, that you can come to terms with it too and, without sounding cheesy, carry on living your life and enjoying it.

I know that if I do end up losing a lot or all my hair, it's not going to be easy... I love my hair. It is a massive part of your identity, self-expression, and the armour that gives you the confidence to face the world. But if it happens, I will follow your examples, because you guys are extremely inspiring, and just being a member of this site is comforting.

Michelle - yes, my scalp does seem to itch a lot right around the time when a lot falls out. Though the baldness is only at the back, the texture of all my hair seems to have changed, and it feels thinner all over. That could be paranoia though... like when you find a spider on your arm and suddenly your whole body itches!

I think I'll invest is some pretty head scarfs for now and carry them in my bag, so that if the nightmare happens (tons suddenly falls out in public) I'll be prepared to deal with it. Right now I feel my confidence in being around other people has been knocked - because I'm constantly aware that I'm losing my hair and nobody else knows.

I've told a few close friends. They tell me not to stress about it, as that can make it worse. It's quite frustrating, as I'm not stressing about it - more just upset and scared really. But it also gives you this big burden that if I stress and it gets worse, then it's my fault. And that in itself is stressful! Really though I don't think you can think that way -it's not your fault, it's something that's happening, and to the biggest degree, out of your control.

Stella, I'm really sorry to hear that you've recently lost all your hair. It must be a really hard thing to cope with. You are so right though... there's still so much life ahead, and hair or no hair, that's incredibly exciting. Good luck to you too.

Thanks again, guys, I really really appreciate reading everything you have to say. Have a great week everybody
x

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Permalink Reply by Lisa Santer on July 26, 2011 at 5:07am

Welcome AJ. This is your site too. I'm glad you found us.

The link between stress & our hair loss is not so clear. I think there's a weird way people sometimes want to blame others who have something bad happen to them--maybe it makes the world feel safer if we can say people brought misfortune on themselves: I don't do what they did so it won't happen to me. In reality, it is not your fault!

Yes, losing hair is hard. It is a big deal and it takes time and work to adjust. Getting the support you want and need is an interesting challenge. First you get to figure out that you do deserve support. Second, you get to figure out what support actually looks like for you now (maybe a shoulder to cry on, joking, advice, shopping for scarves/wigs, pretending they're the one losing their hair and someone said something off, . . .). Third, you get to clue folks in on how to give you that support. Fourth, you get to fine-tune. Each of these is often a particular challenge for women (we're stereotypically supposed to give support, not get it, and certainly not ask for or direct it), and an opportunity for us to grow.

For me, treating my hair loss as a secret was not a healthy choice. My friends helped me realize that people respond to my cues about it. If I act as if my baldness is a huge, terrible secret, others whisper, pity, and laugh. If I act as if I'm attractive with nothing to hide, others usually are genuinely attracted to me and see any hats or scarves (and even wigs) as accessories.

Wishing you a week full of wonder, AJ.

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Permalink Reply by Beth M on July 26, 2011 at 7:06pm

Hi AJ,
I cannot give you the perspective of one who has dealt with this problem for years and has come up with the perfect coping mechanism as I am, like you, a relative newbie to this whole hair loss thing. I found my first quarter-sized patch on the right side of my scalp one year ago (at age 46); and have, over the last year, had some new patches grow and some regrowth in the original patches. Like you, I feel like my hair is quite different than before--thinner overall and dryer. I always had very thick hair and for a long time was able to count on my hair just covering the bald patches. I started being very mindful of the windy days, though, as I was fearful that the wind would expose my head. And as the patches grew, I had to get more and more creative with how I parted my hair. In April, I bought a "topette"-- a human hair half wig that blends in beautifully with my own hair. Though I can't say I love it as much as my original head of hair; it has allowed me to stop obsessing about whether my bald spots are showing.

I wish I could promise you that you will one day be at perfect peace with your head; but I don't think anyone can promise that. What I can suggest, as one still figuring this out, is that you develop strategies for making yourself feel less self-conscious. That might include some scarves, hats, a wig, or a combination of things. I admire women who shave their heads and lead a beautiful, bald, and proud life; but that isn't something that works for everyone.

I also recommend a product called Dermatch which is like a pressed powder that matches the color of your hair and can fill in small bald patches so that you don't have to worry about stark white scalp skin showing through. I just returned from a trip to Hawaii and used this while snorkeling and sunbathing and swimming. Even though I have lost close to 50% of my hair; it really wasn't that noticeable.

Good luck!
Beth

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Permalink Reply by unise194 on July 27, 2011 at 12:32am

im here reading your story and it sounds jist like whats happening to me im scarred as wellthe spots keep getting bigger my mental status is just crazy .

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Permalink Reply by Jamie on July 29, 2011 at 4:23pm

Hiya AJ, I know how you feel to be diagnosed with AA and it's not a nice feeling to be told that it's unpredictable and it could do anything, at the min mine is two patches(one large one over my ear and one not so large about size of 50p on back of my head) I feel down all the time about it but it doesn't go away and there is nothing I can do about it, it's been there nearly a year now and I blame it on relationship and work pressures, now they have both left me I have started to see some re growth but not a great deal! I'm too hoping this site give me some more ideas and confidence to deal with it! You are definately welcome on this site as it is for people who have alopecia or people who want to know about it. I hope eventually it all works out for you.
I'm in the process myself thinking of shaving my head as it's getting to hard to cover it up'

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Permalink Reply by AJ on August 4, 2011 at 5:41am

Hi Loren Simone, thanks for your response. Sorry to hear you're going through this. That's great that your dermatlogist is positive about re-growth.
I don't think you should feel guilty at all about being distressed about it. Like you say - it is cruel and traumatic! You sound a lot like me in that your initial reaction is to make people around you think you're fine, you're coping, and it's no big deal. And part of that is wanting to be in denial, I think. But losing hair is very traumatic and frightening and upsetting, and you've every right to shed tears. But I really hope in time you don't feel so upset all the time. It's a big re-adjustment and I think it's perfectly normal if you don't like it or get used to it overnight, but there's so much more going for you.
When I first went to the doctor, with my small patch, he said casually, 'it's very unlikely to get worse, don't worry about it.' Three weeks on my patch has tripled in size. And when I came on the internet, I realised from other people's stories that alopecia truly is unpredictable, and there is the possibility that a small patch leads to sugnificant hair loss.
That terrified me - I sort of felt, will I be putting life on hold now, counting the hairs on my pillow every morning, just waiting in dread for that day to come?!? I felt that way for a couple of weeks but that seems to have lifted now. I had a heart to heart with my boyfriend (who I think was in more denial than me!) and told him whilst I loved his positivity, I needed him to accept that me losing more hair in the future was a possibility, just so I'm not also constantly worrying how he'd react or accept it if it happened.
And I had so many plans this year and next - things I want to achieve at work, countries I'd love to visit, dancing events to go to, etc. For a split second, I couldn't imagine how I'd do those things without hair - would I have any confidence left??
But I figure - what happens with my hair now is out of my control. It might fall out drastically, it might not. But life is going on in the meantime and it would be a huge shame to let it pass by. I know if I wake up one day and find a new scary patch, I'll cry again! (I'm still human, I'm still a girl who always loved styling her hair, and I'm still scared of judgement and looks in public!) But it'll be ok, and we'll find ways to cope. Just like so many people on this site already have!
I hope you feel better soon. Keep me updated with your progress with the treatment - I'd be really interested to hear. x

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