Frequently Asked Questions about alopecia (part 4)


“Don't blame yourself for losing your hair because you are stressed out. It is a cyclical argument you can't win. Just accept the fact that this condition is a pain in the scalp, and find a way to deal with it that is positive.”

“The biggest issue I have in trying to make stress the number one cause is that it starts playing on feelings of guilt.”

“Doctors told my parents in the mid-sixties that my alopecia was due to "nerves" (the phrase of the times for stress). Heck, one wack-o even gave me Librium, a tranquilizer, for a year, to try and regrow my hair, when I was a child. The result: my school grades plummeted, and my parents were relieved of hundreds of dollars in follow up doctor visits and treatments. I'm still a chromer, 28 years later!”

“The Dermatologist gave me about 2 minutes of his time to tell me that this was caused by stress. I got some injections and a topical lotion called Cordran. This visit was $122 which I think my insurance will pay, but they will not give me another referral for the Dermatologist "because of the AA diagnosis". The Dermatologist was also "helpful" enough to tell me that if I didn't do something about the stress that the hair that grew from the injections would fall right back out. I didn't know I was under any stress, but that monkey he put on my back is stressful.”

[Is there such a thing as an oxymoron in medical therapy? Probably the closest things is telling a patient not to worry, that his/her condition is caused by stress.]

“As long as I drive in rush hour traffic, I will never have hair. This isn't me talking to my cells, it's my cells talking to me.”

The role of stress is somewhat controversial. Let me say that at present an equal number of studies have shown either positive or negative correlations between depression, anxiety, other psychiatric disorders and alopecia areata. If the psychological disorders always followed the onset of hair loss, the association would be a simple one: hair loss is the cause of the psychological problems. However, since the psychological problems often develop before hair loss, the cause/effect relationship immediately becomes more complicated. This unclear relationship is exemplified in the study done by Maffei et al. in patients with androgenetic alopecia. Maffei and associates described the prevalence of personality disorders as a "psychopathological reaction to alopecia". Since personality disorders are usually formed during a person's adolescent years and some patients developed alopecia well after this age, the sequence of onset and, therefore, the cause/effect relationship between androgenetic alopecia and psychopathology is quite difficult to assess. Taking this caveat into consideration, most positive studies of stress in patients with alopecia areata have shown an increased prevalence of events having objective negative impact, especially those that are uncontrolled and undesirable. These profiles of life events are seen primarily in depressed patients. Theoretically, depression modulates the immune system (e.g., these people are more prone to infections), affects the efficiency of immune cells (lymphocytes), and could therefore modify the expression of the disease.

Our own studies have shown an increased prevalence of mood disorders in patients with alopecia areata. However, we also found the same prevalence in patients with alopecia due to other causes. It seems that the presence of mood disorders is related to hair loss, irrespective of the underlying etiology (e.g., immunologic, hormonal, etc.). The severity of the mood disorder, on the other hand, may be related to chronicity, available support and other environmental factors.

In summary, there have been many studies detailing the incidence of emotional stressors preceeding an attack of alopecia. Their results have ranged anywhere from 5-96%. Some of the problems explaining this huge variability is the fact that many researchers have not quantitated their emotional stressors, spelled out what they meant by "life stress", "object loss", etc., lacked adequate controls, and relied on subjective recall for events that may have happened many years before.

Almost all positive studies suggest that a clustering of social or life adjustment events are not sufficient by themselves to reach etiological significance. If anything they may influence time of onset of illness. Although here, I am not sure how these authors would explain alopecia universalis in a toddler (AA is rare during the first 2 years of life). What type of stress are they under? Should I play with Barbie or Ken? Barbie? Ken? Barbie?...(Excuse the interjection of society's stereotyped models of beauty; Ken and Barbie- or should it be Barbie and Ken?).(More on the Barbie complex under FAQ part 6, miscellaneous).

Stress has a modulatory effect on the immune system and it may have a role in AA. It has already been established that stress aggravates a variety of Dermatological conditions including urticaria, psoriasis, hyperhidrosis, and many other dermatitis. A good recommendation would be for future studies on stressors in alopecia areata to correlate their results with immunological/biochemical data over a period of time (from the acute attack to recovery).


“I've been through all the emotions of grief and frequently travel back to the old ones that occurred before acceptance.”

“This list has illustrated to me that intelligence and kindness are prerequisite for alopecia -- and they said it was stress. . .”

“I am still walking that thin line between hope and final acceptance that AA is here to stay. If nothing significant with my hair happens in the next few months, I will hop off the hope wagon. Accepting the disease as permanent should be better than the emotional roller coaster I have been on.”

“My point is that we, those of us without hair through no action (or choice) of our own, cannot simply walk in society without an explanation.... I, for one, am tired of being judged by all those wonderful warm hearted generous people. I don't want to be treated with a solicitous disregard for me as a person. I don't need a person to show an animated interest in my condition. What I need and won't get is a total disinterest in my bald head.”

“Once you get sick of asking yourself "why me?", you can begin to ask yourself deeper, more meaningful questions. These deeper questions have afforded me the opportunity to discover who I REALLY AM. I now base my life on the way I want to live.”

“I always thought that my younger brother being born was the reason I got this. I was the center of attention and then he came along and took my light. Then of course I had the theory that God was punishing me. That one was good for alot of years. Now I am an old lady and really do not care what started it since 51 years later, what can I do about it?”

“When people begin asking me questions after I have told them, I feel like jerking my wig off of my head and blinding them in the reflection!”

“...I know what it takes to get throught a day. It is a war, but it is worth it. I don't think a single tear was wasted.”

“At the age of 56, I have had my share of really bad days!!!!!!!. Those include days when my parents died, when my brother died, when I learned I had lymphoma, when my marriage ended..and every day that my hair began its great fall.

“I have shed innumerable tears over my hair loss. Oddly enough, when I had cancer, I did not ask why me? I accepted that this disease happens to people and I was one of them. But when the hair came out, I cried, screamed, pounded my pillows, and anguished, why me? why me? why me?”

“I do not feel angry. I feel isolated. I feel like a "stranger in a strange land." I even feel isolated from myself at my strange condition. Sometimes I dream that I have hair. When I look into the mirror I cannot imagine hair. When I look at photos of myself with long, shiny dark hair, it almost feels like that was another existence--a place that I can barely remember and to which I will never return.”

“I've been AU for over 19 years now, and though I have come into a greater level of acceptance for where I am on my journey, there are still days that I long for hair, for being the person I was before this all started. So many times I look at the mirror and deep down wonder who that person is looking back at me.

“I've been very fortunate in my life to have a wife who never saw me with hair, she loved me from the moment we first met, no hair and all. She has always accepted me for the person inside, not the appearance the world sees.

“Reading these posts brings to mind a analogy. I shared one similar some time ago, maybe someone can find something in it worthwhile:

“I feel my life is somewhat like being a person involved in a really bad accident, and they wake up in the hospital with no memories of who they are. Fear and a profound feeling of being alone sets in, as you realize that no one knows you. All you can do is try to pick up the pieces of your life, and try to start new. Eventually, you start making friends who say they understand, and in their own way they are supportive. But they truely never understand completely; for they never see you standing in front of the mirror in the dark trying to remember who you were...

“But life goes on, and you make a new way for themselves. New friends, new family, life becomes normal on the surface, but down deep inside, there is that wish to know; to remember. Then one day, news of a possible address comes; a place where answers may be found. You get in your car, and on the way there, you imagine what it's going to be like once you get there. You pull up and get out of the car. There, you find all the people who know; who understand fully. All the friends and family who really know are waiting for you. A peace comes over you as you finally realize you are not alone any longer; you're home....”

Anybody facing a great loss is likely to transverse a torturous psychological pathway. Some of these stages pose certain stumbling blocks that need to be understood and overcome. Some children may have been raised with praise of their physical attributes. They learn to charm and use their looks whenever possible. Loosing their hair, means loosing a living tool, loosing their leverage in life. Hair loss may mark the beginning of agony, anger, and periods of cussing at every damn hair commercial for years to come. You may feel unprepared to accept whatever might happen. The following paragraphs will illuminate some of the potential pitfalls (see also anticipation). Case histories have been provided of people that have been there, know the discomfort, the hiding, and the salty sweat in the eye. The end of the road is acceptance but the road itself is paved by spiritual growth, a true beatification. At the beginning you may find that there is room to improve, that there is still a fair amount of courage left to exercise. At the end you will find that it is your choice to select the positive or the negatives from your ordeal and live by them.

Expectations early on are very different from those accrued after several years of experience with the condition. Early on you may not be in a condition to write to a support group. You think it will go away, it couldn't possibly be happening to you (this is called DENIAL). It must be something that the doctor has missed in his diagnosis. Maybe it is the hot weather, the UV rays from the sun, or even the drinking/swimming water that caused it all. People may be convinced that it is because you have always eaten well, exercised and been thin. It's your mother's opinion that this never would have happened if you had eaten more cake, cookies, and gravy! You try to fix all of these things, gain weight, but keep on losing your hair. The cyclical nature of the hair loss in alopecia areata may foster this stage of denial but it only makes it more difficult to handle it every single time. This is one place where "you get better with practice" doesn't work very well. If you ask yourself, "Why me? It's not fair." I don't agree. Instead, ask yourself, "Why not me?" Are you so special that you should be the only living person ever to have nothing bad happen to you?

Denial may often be seen in parents of children with alopecia. Most parents' reactions/non-reactions aren't meant to hurt their child, not at all. It's just that WORRY is a huge burden for parents and it automatically comes full-time with the territory. If the parent seems to be "in denial" and/or not wanting their child to go "au natural" it all comes back to WORRY. Worry for some parents that if they say anything (make a point of alopecia), it will hurt their child even more. Worry that if their child doesn't hide alopecia, they won't be safe and someone will hurt them - emotionally or physically.

No one can take away another person's worry. It's theirs to own but necessarily to keep. It doesn't go away just because someone says "don't worry." On the other hand, it certainly doesn't hurt to ask the question, "Mom/Dad, what do you worry about most for *me* when you think about alopecia?" Give them time to formulate an answer-- they'll be WORRYING their answer will WORRY you. Many a loving parent lies/fibs/pretends in order not to worry their child. Some of the most worried parents are the biggest and best "pretenders" of all -- they're not worried in the least. Wrong! If they can't/won't confide their worries, well you can't make 'em, but that does not mean they don't love you.

Mood disorders, especially depression, are common early on in the course of alopecia areata. It is natural to be overcome by fear and depression when facing an uncertain future, a great loss, and the possibility of disfigurement. All of a sudden you will realize that the hair loss is not going away- you go from denial to DEPRESSION/ANXIETY/ANGER.

Parents would give anything to have their child's hair return. They certainly would rather experience hair loss themselves than have their child suffer from it. Yes, they may rant and scream at God and tell Him how angry they are. If anyone in their family suffers, it is definitely them. They long for a full day without worrying about their child. It is an actual physical longing that hurts. Sometimes it is so strong, and they can hardly breathe. But, most days they can just shove it back and keep praying, moving and just living.

Take for example the story of one of our friends:

“This past July, after recently obtaining my BA at the age of 22 I noticed an increased amount of hair shedding. No-one believed me, because I was always so fanatical about my long, blond hair, which I had never cut or permed my whole life. It truly was my "crowning glory," and what I considered to be my best and "most attractive" feature."

“One shower in particular, stands out as one of the most horrifying times of my entire life. As I was combing through my conditioner, the long strands remained in the comb, and began accumulating all around me. I just stood there - frozen. The bulk of my hair fell out that day, and within 3 months, I lost everything.

“I know it hasn't even been a year since this disease has entered my life, and I dread knowing this is a condition I will have to live with for the rest of my life. I have a difficult time relating even with other people that have alopecia. I get really upset sometimes when people tell me it will get better, when they don't know how it feels to have no eyebrows and eyelashes. What I would give to switch places with them!

“One thing that bothers me very much is thinking about how I will find a boyfriend. A few weeks ago, a 23 year old man asked for my phone number, which I gave to him. (When I am "made-up" it is difficult to tell I have AU - plus I always wear a hat... which is annoying, but it is the only way I feel comfortable) To make a long story short, after about 20 minutes into the conversation (right about that time when he was getting ready to ask me out) I told him I had AU, which he had never heard of. Although he appeared genuinely interested and asked questions, I could tell he was shocked and that it made a difference. The worst part is, I know if situations were reversed, it would make a difference to me too.”

At some time during the DEPRESSIVE stage the patient will ask himself/herself, WHY ME?? There is a passage in T.S. Eliot's "The Cocktail Party" which relates, in certain way, to our discussion. Celia is depressed and goes to a psychiatrist for help. She begins her first session by talking to her psychiatrist about "why me?". She says:

“I must tell you
That I should really LIKE to think there's something
wrong with me -
Because, if there isn't, then there's something
With the world itself - and that's much more
That would be terrible. So I'd rather believe
There is something wrong with me, that could be put

In a way, it's comforting to think we brought this on ourselves. At least then, there's a chance we can control it! False hopes only provides for a fragile outlook on life. Pseudo- rationalizing your condition prolongs the "why me" stage. Do not "legitimize" your depression. The first stage towards recovery involves recognizing these potential psychological pitfalls. If anything, having alopecia areata will allow you to educate yourself about the condition, assess your interpersonal relationships, and define specific areas in your life worth improving. I have seen that, in many kids, growing up with the condition has made them stronger and better equipped to deal with other difficulties in life.

Another potential problem during the DEPRESSIVE stage is the inordinate amount of time some people may spend trying to cope with feelings of having lost their femininity or masculinity. Since self-image depends on looks and so much of that is your hair, your eyes (without eyelashes and eyebrows) it is not uncommon to suddenly feel like a non-person while looking in the mirror. Some may complain initially of abnormal sensations. Since a major portion of touch sensation is due to the movement of the fine body hair, a mate's touch could make you stiffen. You may feel uncomfortable with your spouse looking at you because of the recurring thought that you have become hideous. Another annoying thing in the first months is that your nose may not stop running. Every spec of dust can invade your nose and eyes and irritate them.

There just isn't a better way than alopecia to flatten the ego of certain people, it is the perfect choice. For some the most painful revelation the condition may bring about is how vain they are/were. They find out that the only confidence they ever had was in their appearance. Vanity is a character defect of them and alopecia prohibited them from indulging in it. That is where most of their pain came from, wanting to "use" something they had relied on, and being unable to do so. They are so concerned with their own plight that they wish this on people they consider insensitive to their alopecia, or who just seemed to have it too easy. They become enclosed in a cocoon, feeling miserable for so long, and in no way ready to accept this condition. How funny that when they finally had accepted having it, but realized at the same time it was an illusion, and began to use it for for their own edification... it was an uplifting experience!

It takes some time to come to terms with the fact that you are going to have to live with this. Some people feel that if they ignore the problem, it would not be as real and as painful as it was at the time. This is the subconscious "I hate myself" period. They feel the need to "hide" their alopecia from the world and to a certain extent they hide it from themselves. Boy are they wrong. Hair loss may not be going to go away. You aren't going to wake up and find it was a dream. What a growing up process it is! I can only say that you must accept that you have the condition, hope for the best, plan for the worse and separate alopecia from yourself. You may hate having alopecia, but you must like yourself now as much as you did before the onset of baldness. It is two different things, alopecia and who you are.

Children behave different from adults during passage through these stages. There is a de regeur right of passage for *all* kids (usually in their teens and into their twenties) to blame their parents for *all* their woes before they reach a level of acceptance. Now, some "kids" never reach this level of acceptance - most are called Baby Boomers. Seriously, it's no different for hair than for anything else including health, height, looks, economics, etc. The task of a parent is to teach their children that they are responsible for their own happiness, satisfaction, and for playing the hand they're dealt. Before that, yes kids will go through a stage of anger and blame. It's a parent's job to nip that right in the bud!

Acceptance only comes with time. It takes time to go through the grieving process. It is almost easier to accept yourself once all of the hair is gone, because you can then get on with your life. You don't have to spend all of your energy pondering if your hair is going to fall out or how to cover your bald spots. The "falling out" may really be quite irritating...waking up with a mouth full of hair, brushing yourself and realizing it is your hair and not the dog's. Constantly brushing with your hand to surreptitiously eliminate all of the "hitch-hikers". Here hair, there hair, everywhere a hair,...this can all lead to obsessions (next phase: denial-depression-OBSESSIONS).

A short time before, when you had your full head of hair, you didn't go around every minute thinking how great it was to have hair. Now that you are bald, you spend much time thinking how great it would be to have it back....You have to wonder how much sense that makes. AA does take a certain amount of self reinvention, but I don't think it is necessarily bad; uncomfortable, yes.

One of our members once wrote, "What concerns me most, and maybe that's why we're all here on this list, is how obsessed I am with my alopecia. I hate the way I look, but I stare at myself constantly in the mirror. There is more that defines me than my alopecia, but it's the first thing I think about when I think of myself these days. I have gained about 20 lbs in the last 2 years, which I attribute to not really liking the way I look in general. The red hair (wig) was a major lift for me, but I'm still bald, and I still have to wake up to myself without hair (as does my husband)."

For those alopecias that have gone through the tumbles and falls of relapses and remissions obsessions may take the form of a roller coaster ride. Think about the last time you were on a roller coaster. If you have been on many roller coaster rides, think about the "scariest" one you've been on.....the one that goes upside and backwards and a 45 degree angle. Now, when you first sat down in the car, what were you thinking? After you strapped yourself in and were waiting for the ride to finally start, what were you thinking? As your train slowly climbed the first hill, what were you thinking? At anytime were you thinking.....a slow start must mean a fast train ride....if the train climbs at less than 10 feet per second, then it means that the train may go slower (or faster) on its next decent?.....if the 3rd loop was really fast, then will the will the next loop be slower, or will it accelerate?....if I've done three twists, does it mean that I'm done?.....

Most likely you weren't thinking more than "just let me get through this....whee! this is fun....o-h b-o-y here it comes...." Here with our feet planted firmly on the ground, we (unfortunately) have time to stew over the next roller coaster ride move. But we forget that unless we are SO familiar with the ride, we will never be able to fully predict or anticipate its next twist or turn. Some rides are 30 seconds long and total stomach-turners, others are 2 minutes long and pretty mild. Will the Wild Man is his own roller coaster, and all I can say is hang on and enjoy the ride. I'm not saying give up on treatments, I'm just saying try not to calculate the height of the next drop by the speed of the current ascent.

Obsessed people are not content to wait. They haven't given up on every little therapeutic possibility. Overall it is an energy draining process and a useless one to boot. One definition that we may coin for insanity is doing the same thing over and over and over and expecting different results. Obsessions often represent a displacement of anxiety which itself may be caused by fear. Your physician and social support group (e.g., your family ) should recognize and sympathize with your doubts. Talking to them openly and reading about alopecia areata (sort of getting to know the enemy) may help you face this condition. You can always talk to us through the list server. I am sure that the group will listen. Knowledge about something may take some of the fear away and at the same time distract you. It may also teach new coping skills (e.g., SUPPRESSION). You are not alone and you will find many friends here. Maybe now you are ready for the final stage, finding your own comfort zone in "ACCEPTANCE".

At this point you do not expect miracles and have decided to get on with living, hairless or not. I would never judge those who are willing to pursue further treatment because there were plenty of times that I did it. However, the cure for the condition may not rely on medical treatments but in "time". You had it, tried all the cures, and in "time" the concept of having alopecia finally sunk in and you accepted it. Not that you would have been willing to ignore the treatment possibilities at the outset. It takes a while to adjust. It takes time to rationalize to stop seeking further treatments. Personally, I can't take the let downs anymore and choose not to put myself through it. Similarly, it takes time to overcome the anxiety over that decision and its implications. For many, they may have simply outlived the treatments and thus became less desperate.

For some the process of losing their hair was worse than actually having lost it. Now that they are bald, the hair is gone, that's it. There's no further avenue to pursue. No more picking up the hair on the pillow, combing the thinning locks, panicking, wondering when it would all stop. There's no more coming back and forth, hope doesn't flair up anymore only to be dashed to pieces. The acceptance is more like a flame going out of a campfire - subtle and gradual so that you don't even realize it is happening. In other cases only a couple of treatments may have been tried. They were unsuccessfull, so no other possiblities were ever tried or offered by the Dermatologist. One of our participants was told that she would be called if they came up with anything new (and that was about 7 or 8 years ago).

The decision may be alleviated depending upon the personal circumstances. You may live in a rural area, so traveling to a specialist is not easy. The only opportunity is to chose between pursuing phantom hopes and just dealing with it - letting nature take its course. It is sort of a sad decision to take, but on the other hand, very liberating. You are tired of it, the treatments are uncomfortable and you often wondered how good they actually were. They took valuable time out of your day (imagine a working mom with a toddler). Getting over the treatment gives you some closure, that you had tried it all, it didn't work, and now you just had to get on with it.

Acceptance is not about whether or not you wear a wig, it is about how you are going to deal with your condition. While you still may not LIKE alopecia, you have ACCEPTED the fact that it is now a part of my life, and may be for years to come. Let me reinstate that as you lost more and more hair, you realized that there were only two choices to take. Either you were going to live in fear of it and what others would think, and therefore let it control your life; or you were going to face it and accept the consequences and challenges. If you decided to accept the condition maybe you also found out that the consequences weren't all that bad. Hey, even after acceptance some of your friends may feel that you exaggerate the importance of your having alopecia, but they should never cut you off because of it!

After several years with the condition some of our members report feeling they are a better person because of their alopecia. What has acceptance gained for them?

It's probably true that having a condition like alopecia areata lets you "explore" emotions that you otherwise wouldn't come into contact with. The hair loss promotes an open-minded, accepting, non-judgemental attitude towards other people. Acceptance means you will no longer hide behind looks, realizing you are a real person with an attractive personality and a lot to offer. You may have an interesting job and some may have spouses who stuck with you through all the shallowness and craziness. A good spouse will understands when your self-consciousness pops back up. Acceptance will make you thank God every day that this is all He gave you to deal with. In the beginning many people may have asked you if you were going through Chemo! That is what made many alopecics realize how lucky they were, they only had AA and it was not life threatening. Now they joke with friends that they will never worry about getting gray hair and save a fortune at the beauty parlor and when (if) they ever get brave enough they can be any shade they want to be, any length, any style, or no style and can change their hair as fast as their moods.

More important than what other people tell you, is what you say to yourself. People's behavior usually reflect the way you react to your own condition. Acceptance means that these people will no longer pity you or shun you. You will get to feel normal- just hairless! The final rub is not having to admit to yourself that being vain is the most painful revelation the disease has brought forth. It is just a frustrated desire to look "normal", whatever that is. It is interesting to note that in Northern Africa/Morocco - a condition of the alopecia areata type/hair loss is colloquially referred to as the "curse of the good" (or ' beautiful' ) - go figure!

Acknowledging that the disease has taken away a lot of your options, but that you can live and cope with it- that's acceptance. Remember that you want to continue being more comfortable with the condition, not do the opposite and change your lifestyle so that it's more acceptable to others. Establish your own "look" rather than copying the fashion statement of others. Dabney Coleman once said: "Life is never in the fear of losing. It is the joy of having." Not only do many of our members accept the fact that they are bald, they genuinely like how they look. They have incorporated their looks into their lifestyle and decided to think about baldness as making them "special".

There is nothing more appealing and sexy to most people than a person that is comfortable with themselves. I would like to say that we need to put on an attitude. Try each day to put on an attitude, just like you would put on a raincoat. Little by little the fit gets better. Little by little you see the rewards of carrying your head up high (look out for sunburn!! lol). People will see the warmth, caring and confidence. that you have the first two, just work on the third.

One of our friends hit rock bottom one summer day when while sitting at a red light she noticed balck sweat running down her forehead. The sweat was the stuff sprayed on her head to hide the bald spots. It looked like melting cotton candy. She started bawling and crying; then, a boy walked in front of her to cross the street. As she looked at him, he smiled back. Then she realized that he was in crutches, he had only one leg. She thought, "Here is a man in his youth with a far worse problem than me and still he has the courage to smile, and I'm bawling like a baby because of some hair that isn't where it should be". Remember the man who worried because he had no shoes until he saw a man who had no feet. Alopecia can be extremely stressful and depressing but we have to try and keep things in proper perspective.

It seems that everyone has some kind of cross to bear. Sometimes our true problems are psychological, not physical. Although the stranger could have been smiling at the hysterical lady with black goo running down her face, it really doesn't matter. A perfect stranger helped her come to terms with her condition. Misfortune is an everyday occurence that most people take for granted. It was in a 1993 movie ("Saint of Fort Washington") that I encountered a statement that made it easier to verbalize this point. Danny Glover's character, a homeless person, took notice of a Wall Street executive eating lunch in the park, and stated that the executive was one paycheck away from being homeless himself. In matters of family, economics, and health, we take for granted what we are fortunate to have, but at one time or another we will all experience some loss.