Frequently Asked Questions about alopecia (part 2)
“I was mislabeled as having anything from parasites to fungal infections. When the neighborhood resources didn't work, I was sent to Doctors. Lots of Doctors. Even a convention of dermatologists, for the entire Commonwealth of Virginia, stopped by to LOOK at ME. I began to fear that something was seriously wrong with me, despite the fact that my grandfather and mother had alopecia (it was reallly never spoken of) (then in remission), I began to wonder if I might die. I started to look a little mangy on the head, and my grandfather shaved the remaining hair away. I will never forget the horror and shock of looking at myself, hairless, in the mirror for the first time. I was only eight years old.
“My childhood was spent in a lot of fear, shame, secrecy, and isolation. I still suffer feeling, sometimes, somehow, strangely and vaguely, not as valued as other people. It's an emotion, not a logical argument.
“Maybe other people are better qualified to answer how parents can best help AU children cope and adjust. But, if I had a few wishes to spare on my ex-childhood, they would have been that my parents and relatives talk more to me about the condition (even if they had to learn more first); discourage me from hiding under hats, wigs, and in my room; encourage me to participate in school events, and sports, and just to treat me normally. A lot of my feelings about the condition and myself, were reflections from others.
“I really hate to take the cop-out that my life is so bad because of AU, but the simple fact is that it *HAS* been different because of being hairless. Or rather, the life has been different because of the reactions to being hairless, I guess.”
I have spoken to many patients with alopecia areata, a large protion of which started early in childhood. They usually find even talking about the subject to be highly upsetting. It is obvious that the condition colored a great deal of their life and that painful feelings are rather easily evoked. They live with the fear that this will happen to their kids. In the case of my familiy, my wife (previous AA, now recovered) blames herself for what has happened to our daughter. One of my dearest friends suffers from AU. Even though he is more able than most to make the case that one can live a full life with alopecia, he preferes to avoid the conversation. By way of comment, I am taking out the term defense mechanisms from this section. As I see it, everyone with the illness needs to adapt and cope, more than defend against feelings. The defense mechanism language tends to be somewhat negative in its connotation. I personally see it that there are more and less effective ways of dealing with a set of objective problems (not just unconcious wishes which must be defended against). Which means of coping people use will depend on their strengths and weaknesses/supports, totally apart from their AA condition. Thus, the computer literate who loses hair and is socially self conscious might find talking on the Internet the best means of socializing for a period of time. This option is not readily available to the less computer savy. I realize this is a little concrete but perhaps it is illustrative. On a personal note, the child must not only confront his own feelings of self consciousness but also those of his parents. In the case of my friend, his mother was profoundly concerned about her appearance (she was somewhat obese). She found it hard to accept what had happened to her son and that in turn made it more difficult for her son to accept his own condition. Maybe as parents we should also work a little bit on our own coping skills.
Coping mechanisms offer a way to make something bad better. They represent a way to relieve emotional conflict and anxiety. It also makes for a healthier, more well adjusted individual. There are different types of coping mechanisms, some are mature and others are immature. The immature ones help you cope with a painful situation but only at a particular price- usually by distorting reality. An example of a bad defense mechanism (also called negative or primitive) is denial. With this mechanism, a patient invalidates an unpleasant experience by ignoring it. The experience ceases to exist in the person's mind. Reality testing is diminished. The most common examples revolve around patients avoiding the recognition of a serious physical illness, e.g., the alcoholic who denies having a problem or the heart patient who undertakes strenuous construction work. Although all of us occasionally use some of these negative defense mechanisms, it is unhealthy to rely on them heavily.
Healthy defense mechanisms are those that keep painful events within bearable limits. They allow you to attain mastery over the event and to handle any unresolved conflicts regarding the same. You won't be surprised to learn that I have spoken to several hundred (if not thousands) of people with AA that lead a full and happy life. Most women have husbands, boyfriends, children, good jobs, even when they don't have a hair on their heads. A study of coping mechanisms is a study of how these people carry a satisfactory life. It is a study of how they have come to grips with their condition, adjusted, and gained acceptance. AA may have destroyed your hair- don't let it destroy your life.
It is especially difficult to adjust when the hair falls out quickly. We can only hope for acceptance sooner or later. Acceptance allows you to work out your problems more effectively. Once you have gained acceptance of yourself, others will follow suit. It is contagious. If people don't accept you for who you really are- good riddance!
Gaining acceptance is a gradual process. Some people just feel different throughout their whole lives. The roller coaster ride may make them feel embarrassed, awkward, self-conscious and even angry. Before accepting the condition it is OK to grieve for your hair. Sometimes it feels good to cry. You can still miss your hair every now and then. Sometimes shampoo commercials hurt. You would welcome your hair back in a minute (including all of the gray and white hair gained during regrowth)- just don't hold your breath. Accept your condition, be realistic, but don't lose faith. At the end of Pandora's box there was hope.
Do not be surprised if it takes you a long time to accept the condition. Read one of the stories from the list server:
“I'll introduce myself by saying a bit about how it was for me as a child. The first 17 years were patchy. The spots I had were large - growing to about 4 inches. They would take about a year to reach full size and another year to shrink back and be gone. Occasionally I enjoyed a full or almost full head of hair but most of the time was spent arranging my hair in a way that would keep the spots hidden. I became quite good at that. I also learned to avoid wind, swimming and other activities that might reveal my secret. It was something to seldom talk over with family and never talk over with friends.
“At first my alopecia areata was a problem - of course, it bothered me. My time of hiding it ended when I was 28. I got lucky and lost all my hair. I had to make a decision and it was to not hide it and to learn to control it, rather than letting it control me. This didn't happen all at once - it was a process that took a few years to become comfortable and it is a process that continues.
“As Bill Murray (in What About Bob?) would say, ‘Baby Steps!!’”
Once you are ready, consider using these coping mechanisms:
Religiosity may provide another channel for sublimation and help you gain acceptance. "All things work out for the good for those who love the Lord". "And if a man's hair be fallen off his head, he is bald; [yet] he is clean (Leviticus 13:40). From the New Testament, Paul addresses the hardships we face in life and talks about how we can use our problems to help others facing the same difficulties. Praying may give you a new outlook on life. A few weeks ago in one of those special moments with her daughter (there a fewer of them as they get to be teenagers) a friend was praying for those suffering from AIDS and cancer. She took the opportunity to explain how alopecia, AIDS, and cancer have a common link regarding autoimmunity. Then she explained about the disproportionately small amount of research done in a non-life threatening condition such as alopecia when compared to those other disorders. So, she suggested they pray for a cure to AIDS and cancer. This cure could lead to a breakthrough in other autoimmune disorders including alopecia! So while we pray for others, the prayers help us as well.
Did you know that the prophet Elisha was bald? God loved Elisha and cared for him. When on the road from Jerico to Bethel some kids came running out of the city to mock him about his baldness. Elisha cursed them in the name of the Lord, and God sent two bears out of the woods and the bears mauled 42 of them. You can read about it in II Kings Chapter 2. God knows what you are going through, and he will reward you for your perseverance and punish those who torment you as he did for the Prophet Elisha. I hope God doesn't punish people who laugh at my daughter by having them be mauled by bears! Having them slip on a banana peel is enough for me!
Dr. Larry Dossey has written several articles and books on the effects of prayer on illness. According to the double-blind studies he and others have conducted, the majority of sick people that were prayed for got better more quickly and had fewer complications. The prayers didn't have to be any formal or structured type tied to any particular religion or belief, they were within the prayer's belief structure. Just remember, ask and you shall receive, seek and you shall find, knock and the door will be opened. One of the members of our list server became AA during her teens. She begged God for her hair to grow back. Sometimes it would for a while, only to fall out again, with the resultant devastation and eventual loss of faith that God had not heard her. Today, she realizes that she needs to pray for acceptance and strength to handle whatever comes down the pike. That you usually get what you *need* but not always what you *want*. She has found much peace in this knowledge.
“Sometimes I thank God for unanswered prayers Remember when you're talkin' to the man upstairs That just because he doesn't answer doesn't mean he don't care Some of God's greatest gifts are unanswered prayers.”
Garth Brooks, “Unanswered Prayers”
“Do you think these people here think we are some kind of alternative music group?”
Here's an instructive story from one of our members regarding a not uncommon fear:
“I survived my biggest AA fear: My wig coming off in public. Actually, that was the worst I could imagine happening (little did I know, I was lacking in imagination).
“I have been wearing a hair prothesis for 2 1/2 years now. All the people in my life, who need to know, know I wear a wig. My family, friends, good neighbors, and of course, my employer. My employer knew mainly because I still had hair when he hired me and he saw the transformation.
“I' ve adjusted fairly well to my circumstances, figured " I can do this!", and have been fairly...happy. It' s just , well , I don't like surprises. And while going through the AU experience I've sort of tried to anticipate "the worst" so I can lessen the impact and gage my response. The only thing I truly feared happening was my wig coming off in public because I couldn't imagine my gut reaction. Yes, I could "prepare" myself intellectually but I knew if this really happened to me...my emotions would be in overload and I was fearful...of how I would really act in this situation.
“BINGO. Life knows what/where we need to grow and always seems to be to happy to oblige us with the experience!
“I went into work on Wednesday morning, April 17, 1996. Business as usual. Little did I know, business wasn't going to be, as usual. My employer's wife was in a bit of a "mood". I proceeded to ignore her. I had things to do, places to go, people to see. She had different ideas. I wasn't going to do, go, see anyone! I paused, hesitated, stopped, realizing she wasn't going to stop her antics until I payed her some attention. So I did. Needless to say, the attention I paid her was not what she wanted. Furious, she reached up and grabbed hold of my wig and threw it out the door! !!!!!
“No, I didn't faint or even "phase" out. As a matter-of-fact I think everyone else freaked out! I calmly and very directly told her "that doesn't bother me" and you know - it didn't. It doesn't.
“I'm more than a female with AU...I'm a strong, loving, beautiful woman dancing in my heart with forgiveness and acceptance for myself and you.”
Another common rumination is the thought of being burried with a wig. The fear may begin after age fifty. Some people plan on an open casket and no hair so that people can see them as they really were. They would probably do in death what they couldn't do in life. These people look at the mirror and don't recognize their own reflection without hair. They probably dissociate a bit even when they don't look all that bad without a wig or makeup. In some their fears may reflect a torturous past or childhood. For many the fear may reflect a self-image problem or even anger. Foresight should prevent a person from being consumed by addictive fears. The fear should not become the total of whom you are. Balance the good with the bad and be more lenient on yourself.
Three additional stories will serve as a way of illustrating "anticipation":
“It still hurts, but I also find with being open and honest about this, it is good therapy for me and also helpful for those around me also wondering why. My baby almost pulled my wig off at church...it didn't happen, but I thought "How would I deal with this?" At this stage, I would probably be very embarrased, but I'd smile and put it right back on. When I change my styles and colors (not too often, but I just went red and longer) people know there is something there and if they are willing to ask...I'm willing to talk.”
“I had my first "most embarassing wig moments" today. I went to get my 2nd wig cut today and decided to wear it to pick up my 2 1/2 year old. Although she has seen me wear it at home, I haven't worn it out yet. I went into her classroom and said my usual 'hello' and I just got this bewildered stare. The teachers got worried and asked me if this was my daughter. I guess they thought I was trying to kidnap her! This wasn't her normal class so I didn't know the teachers. I finally had to tell her (and everyone else) that this was "the wig, do you remember ?" I was so embarassed.”
“In an effort to prepare my newly bald four year old for the inevitable, I told him that people who don't have hair are sometimes called baldy. I told him it was just like blond people who are sometimes called blondie and that it was sort of fun. I did this because I wanted to take the sting out of the word so that everytime he heard it he didn't feel hurt. We sometimes call him baldy and we often get "baldy kisses" from him (we get to kiss his head) which we consider a real treat. He has indeed had several kids call him baldy and he quickly responds "that's Mr. Baldy to you, bub" this seems to work and everyone gets a laugh.”
Just be careful in taking this approach. You wouldn't call an overweight kid "Fatty" just to desensitize him/her. Also don't wait until the child is older and already chided with the name "Baldy". It would probably alienate you from the child if you began this late. This sort of reverse psychology is only beneficial in some selected cases.
Incidentally some of the humorous retorts summarized in the following paragraphs may contain an element of anticipation (what to say under certain circumstances). As an example, a middle aged man came in. He was chubby and balding. He looked at him/her and said "What happened to your hair?" Well she/he looked him dead in the eye and replied "What happened to yours?!?!?! He shut right up.
Losing your hair is not the greatest tragedy in the world. There are some positive aspects to it :-). For those loving couples where both parents and children have the same condition one remedy that mixes humor with acceptance is to teach the kids that they are not BALD, just HAIRLESS like their parents. It may be a way to identify for sure that they are your kids! I haven't met any person with this condition who wasn't truly special. Maybe being hairless is a sign of a truly gifted individual.
If you need to address comments from strangers, the comeback may depend on your mood. If you are tired maybe, "Her hair is on vacation" or "She is setting a style trend" will suffice. For people who are really interested we tell them the truth, others get some of our best snappy relies. Just remember: God is great, God is fair. To some he gave brains, the others hair!
For children the response may need to be at a diferent level:
Some snappy responses, a mixture of Cyrano de Bergerac and David Letterman, on good things about having AA:
Don't you just hate it when …
Other humorous stories are worth noting:
Have you ever tried changing the words to some of the more popular tunes, then maybe you can recognize the following from Jimmy Buffet:
Losing my hair again in Alopeciaville searching for my lost brushes and combs Some people claim that there is stress here to blame But I know, it's my own brother's fault!
The next story came from one of our participants when he went to the airport to pick up a student from Thailand:
“He (the student) was to enroll in the comparative law program at the law school I attend. Upon greeting him I received the customary glances, furtive and self-conscious, that AU produces in some individuals. He was hungry, so we decided to eat lunch. Nearing the end of our meal he drew my attention to his lack of eyebrows, I responded with some comment like "oh that's nice," or some other such insanity. He asked why I did not inquire further into his hairless brow, so I indulged him by asking him why he did not have any eyebrows. He responded, "before I left home I committed a very bad act that could have brought disgrace to my family, so I shaved them off." "Why do that?", I asked. He replied, "my eyebrows were a great source of pride for me, shaving them off was a severe punishment for my bad act." "Interesting", I said. He then looked closely at me and said "You must be punishing yourself very harshly, what bad act have you done?"”
How about a mother who still plays with dolls?
When I was a little girl I used to comb my doll's hair a lot. Consequently many of my dolls had no hair because I would comb it all out. My mother would yell at me for it, but I wanted my dolls to be beautiful so I combed anyway. When Jennifer's hair all fell out in just a few weeks, I called and said "Mom, I promise I didn't comb her hair too much, the doctor said so."
Sometimes real life stories drive the point better than any explanation. We can all learn from the courage and determination of some of our friends:
“I developed alopecia areata when I was twelve, and it progressed to universalis by the time of my 13th birthday. I feel that I have had LOTS of experience with the pre-teen/teen issues surrounding this condition. That was ten years ago, and now I can reflect on the issues of being a young single woman with alopecia.
“Junior high was utter hell--I just can't put it any other way. I think things have changed a lot in the past ten years, because I was the only person in my school, and it felt like in my state, with alopecia. Teachers were not good at dealing with my problem, they never even asked if they could help as their own students teased me DURING class. I had absolutely no one to help me, so I helped myself by pushing it from my mind, and developing a whopping chip on my shoulder. I was and still am very paranoid at times. I was teased incessantly, and friends I had before I came to school with my wig pretended they did not know me. A boyfriend at the time never DID break up with me, so maybe we're still going out. I was coached by my mother to not tell anyone, nor let anyone find out, for those few students in the school (5000 students) who didn't already know. Anyway, what worked best for me was ignoring any remark made to me. I found that if I didn't give the little brats the satisfaction of hurting me, they would lose interest. And they did.
“I don't want to overwhelm you any further with my life history, but I just wanted to give you something to go on. I personally think if my teachers had known, and made an effort to work with my parents, my life at junior high and high school would have been a lot easier. I didn't let it stop me from being in the spotlight--I was a cheerleader and in the performances at school, but people were still always watching to see if anything would happen to knock my wig off. I guess that WOULD have made their day, but it fortunately never happened during a game, but it did happen occasionally. I even think if a kid is brave enough, to make some sort of informational video, or write a speech, and give it to his/her classmates, that would head off any problems. Most kids are just curious, and once they know everything and get to ask questions in a positive environment, they'll accept it. I think that is the best route for any kid to go.”
Pushing things out of your mind is an example of suppression. Complement this coping strategy with compartmentalization. Yes, there is this problem, we treat it and acknowledge it, deal with it, and try to cope with it the best way we can, but then the rest of your life should be normal. Remember, there are plenty of things you are good at. Also remember that you are not the only one with this problem. Keep things in perspective. Other people have other problems, everyone has strengths and weaknesses. Enjoy the support of your family, church, friends, and community. Educate your teachers and fellow students. Doing a report on the disorder and reading it in front of the class is an excellent idea.
“When I was a child I had a tremendous overbite. So bad, I couldn't close my mouth without my teeth hanging out. The teasing from children was horrendous and I never discussed this with my family, teachers or friends. I suffered in silence and because children thought I looked "stupid", I believed myself to be. Consequently, I did not do well in school. However, this is not as bleak as it may sound because I discovered two things about myself. One, I was gifted in dance and two, my family had the gift of HUMOR which influenced me greatly. Of course, braces helped my self image immensely, but before that, not knowing that braces would make me look so different, it was dance and humor that carried me through.
“The point to all this is that what I am trying to do with my daughter is to get her involved in activities that make her feel good about herself (SUBLIMATION). She plays the saxophone right now and loves it. Secondly, I encourage her to talk about this whenever she has a need. Honestly, Jeannie has a very difficult time talking about this and no way does she wish to share this with her friends. However, early on when this first developed she actually told some boys in her class about her hair loss. Believe it or not, they were very cool about this (10 years old at the time) and have never teased her. Right now Jeannie can hide her spots by putting her hair in a ponytail. One day she actually wore her hair down. No one teased. I was so proud of her. Jeannie also knows that I have discussed this condition with the principal, her teachers, and school counselor. This has helped her to feel secure. She knows that if anyone teases her, she has an adult, other than her parents, to turn to. I believe this to be most important. Because, if I had felt adult support at school I honestly believe I would have had a better perspective on myself and felt more confident about life in general.
“Right now Jeannie is 11 rapidly approaching the tough years. She is changing. It is getting more and more difficult for her to talk about this. Partly because the alopecia does not go away like she had hoped and because acceptance from peers becomes sooooo important. So, the child who boldly told boys and wore her hair down one day is approaching the teen years where no way in hell is she going to do that. I think it is important for parents to be patient through these years. I'm going to let Jeannie work this through in her own way, but I can promise you I will be guiding her along. I am one who faces challenges head on and I am going to do my best to teach Jeannie how to do this without ramming it down her throat. It won't be easy and you can bet you'll be hearing from me from time to time. Probably, in time, you'll be hearing from Jeannie as well. When she's ready.
“After reading all the comments from adults who have come through the other side to acceptance and love for self, I know through guidance, patience, and love, Jeannie ultimately will too. For a kid who has to deal with this she is doing great so far. We laugh a lot in our house, we encourage, and we talk. I was fortunate to have a very loving, supportive family and even though back in the sixties people didn't talk, they do now. Thank God!”
While good coping mechanisms are essential in anybodies' life, so is a place to go and be listened to and to get reality checks. This means a good therapist who depending on your age and problems understands depression or the slings and arrows of adolescence. This therapist should be capable of doing behavior modification including R.E.T. (Rational Emotive Therapy).
Decide first on obtaining a male or a female counselor; I can see a benefit to either. For adolescents I'd select someone with a doctorate and many years of experience. The chemistry has to be there as well as a certain level of hipness and savvy on the part of the therapist. One of the major motivations in looking for therapy at this age is to keep a person functioning until they can see, on their own, a light at the end of the tunnel. With teens, a therapist throw safety nets of all types under them as a matter of course.
Therapist can perform an assessment of the level of depression/functioning and suggest whether an antidepressant during this difficult time appears warranted. An appropriate referral would then be made to the family physician who has an ability to explain reactive depressions (if this is the case) and how they can become neurochemical. I favor the SSRI class of antidepressants with my patients who need an antidepressant to help balance out and give the emotional energy they need during difficult times of transition.
“How can these doctors be so smug to make a statement like that when they obviously have no idea what they're talking about, especially when they never even tested me for anything!!! Not only to make a definite statement like that, but to be so cold about it. Haven't they ever heard of positive thinking as one of natures best cures?”
Some patients have been assured of 90% success rates of growing hair (on their knuckles, perhaps?). Ahhh, the medical community always so in touch with their patients. A blanket guarantee like this is an exaggeration, although a less positive individual would call it a darned lie. Have you heard the tape, "Dead Doctors Don't Lie" by Dr. Joel Wallach If this situation ever presents to you, the doctor is quite ignorant and you would be wise to seek another source of help. If he recommends antibiotics, says the hair loss is due to pulling, or recommends a psychiatrist, DUMP HIM/HER! If he spends only a couple of minutes with you and ends by charging over $100, guess what makes him tick? It is certainly not your health but your money! This is the infamous, "looks good to me, that will be $100, please pay on your way out", type of physician. DUMP HIM/HER! I would also quickly dispose of those physicians that recommend or institute highly invasive, painful procedures to children. Always ask for a list of side effects in order to provide an informed consent. Many of these caregivers can be referred to as PALS- Plain Alopecia Liars and Shi_heads. In some cases their lies, misrepresentation of information, and their sole pecuniary interest appears unwavering. You can also call them Persistent Alopecia Liars and Shi_heads. In layman's terminology they are major dorks. If they are honest, they can admit that they are instituting a pharmacological trial. In this case, maybe you'd fare better with a specialist who is experimenting rather than a willing ignoramus. Keep in mind that people running drug trials usually receive money from the pharmaceutical company just for enrolling patients to their study. This kickback may sometimes be as much as several thousand dollars (plus they may receive disbursement from your health insurance- what a scam!). If the physician is honest but ignorant, remember to send him/her information regarding your condition. Educate the ignorant even if he/she is a physician.
A current perspective is provided by one of the members of our list server:
“I remember the painful cortisone injections to my scalp as a little girl of 4 years. The MD who came up with the idea was our family doctor so my parents really trusted him. I think he enjoyed spending their money, because I never got hair growth and he didn't advise against me coming anymore. My parents stopped because I began vomiting when they would suggest I go get some more shots. The doctor would say the shots did not hurt as much as I made them out to be. I think that doctor should take a series of cortisone injections to the head then tell me the throbbing after is "just in (on) his head.”
Stories like this make you wonder about the ethics of some physicians. The little girl suffered needlessly and refused to get proper medical treatment for other conditions later on in life. This painful experience ended with the parents being soaked of a good amount of money and rows of scars in the scalp of the patient reminding her constantly of a negative childhood memory.
Remember, never try to help your child by taking them to every Dermatologist you can find. There is no mighty cure at present. This attitude only promotes negation. These continued attempts at medical intervention may convince your son or daughter that something is wrong with them that needs to be fixed. It takes longer for the child to cope with his/her condition. Rather than focusing on the lack of hair, parents should strive for their young ones to enjoy life as it presents itself, not as they wish it could be. Keep informed but also don't be rushed into potentially invasive treatments based on the opinion of a callous physician.
“My personal story? Here goes: When I was 4 years old, a bald patch developed at the back of my head - it wasn't very big, but it was there and so my mother took me to the doctor who sent me to a dermatologist. He wasn't very helpful, diagnosing Alopecia, but saying there was nothing to be done. My mother, being the stubborn person she is (God bless her! :) refused to accept this and asked to be referred to another derm... He said that not much was known about the condition, but that a new treatment was available and had had some success. We tried it, it was a topical liquid (I can't remember the name) applied to the scalp (by that time I had lost almost all of my hair, although I had some regrowth in patches). I screamed when it was put on because it burned so much and eventually my mother just couldn't take it, so she stopped applying it. During application, no improvement was seen and in fact, I lost the little regrowth I had had. My mother took me to another derm who told us that my roots had been damaged by the topical liquid and that my hair would never grow back. My mother still refused to accept that and we spent the next 8 years shimmying back and forth between doctors and derms trying everything from vitamin treatment (no effect) to Ultraviolet radiation (I ended up in hospital, because I stopped breathing) all to no avail. We cut out colorants, flavourants and sweeteners from my diet - it is very hard for a 5 to 6 year old girl not to be able to eat sweets or chocolates - but nothing worked. In the end, I decided enough was enough - I was tired of being poked and prodded and having needles (which I am terrified of) stuck into me, all for nothing. I refused to try any new treatments and instead, worked on accepting my condition and rebuilding my damaged self-esteem.”
“I am beginning to be a believer in "positive attitude" also. Ever since I told my daughter that we had been to enough doctors, and tried enough treatments in the last year, and now we were just going to leave it alone —her hair loss seems to have stabilized! Call me crazy but I think that since it is no longer the focus of our life her stress is much lower and, consequently, her hair loss isn't so bad.
“Our experience has been that many of the treatments are worse (in her mind, anyway) than the hair loss. Nothing seemed to make any difference and we are all happier not dwelling on the hair loss.”
It is a terrifying experience when hair first falls out and one doesn't know what is going on. One feels that there must be something that can be done to prevent it from falling out. You seek help from a Dermatologist who gives you an appointment 6 weeks later only to then act aloof and say not to worry. Within five to ten minutes he walks out of the room saying there is nothing he can do or prescribing a cortisone lotion to be applied twice per day to the scalp. I am glad that for life threatening diseases, one might get a chance to see a doctor sooner, but I feel it is dreadful that when one has a condition that scares you terribly, one still has to wait for so long to see a qualified medical person. You may later on realize that even if you had been able to get an appointment earlier, your hair wouldn't have stopped falling, but, all those 6 weeks that you had to wait to see a Dermatologist, you wondered every second whether or not it could have helped you in some way.
And while somebody within our list server once mentioned that one shouldn't look for sympathy/understanding from one's doctor/Derm (it is more easily obtained at a therapist's), a bit of kindness can't be that impossible to extend! The aloofness or dismissal attitude probably comes from the thinking that this is a superficial/cosmetic problem and doesn't merit that much attention. Is it that hard to explain that this is a problem where we are on a platform open to public scrutiny, and our personal grief is out there for notice and subsequent discussion; ergo we care what's going on up on that cranium cover!
Not all physicians are insensitive or ignorant. When you find a compassionate and knowledgeable one, grab him. One of the best stories from our list server ensued after a Dermatologist finished examining a boy with alopecia areata. "When the Dermatologist finished examining our son, he added, 'Congratulations, you're going to have a great kid'". In another instance a doctor's nurse once gave a big hug to one of our participants- it meant so much more than the whole medical interview. I think that says it all. Life goes on and so do we. A little kidness is comforting ☺
A good physcian will say, "I'm sorry. This must be hard for you to understand."
He/she will give you the address of the National Alopecia Foundation or other support organizations and tell you about the information they provide.
He/she will tell you there are others with this same condition and the medical field just doesn't understand what's going on.
He/she will understand that you have NEVER heard of this condition and that you are scared.
A good physician won't scoff at your questions or minimize your concerns. He/her will appreciate your questions and will be willing to learn with you as much as possible about the condition.
A classic example of why some patients are treated inadequately is their belief that *each symptom on its own is tolerable*. We are encouraged to be stoic about our health issues, especially when it comes to "cosmetic" consitions or the "unmentionables" (e.g. peri or menopausal problems). Many of us have a multitude of symptoms that if alone, would be tolerable, but together we can find ourselves in a heap of trouble. We hesitate to complain, until it's often too late. Some of the people that I know who lived by this credo for many years have been lucky not to have a serious heart attack. Be no longer stoic, nor be a complainer. Just get the facts to a physician who is willing to listen and work with you.
Besides empathy, another quality of a good physician is being able to convey concepts easily and clearly. This is of particular importance when debating therapeutic choices. We are desperate to find a cure for our children and cannot absorb the enormous amount or complexity of medical information thrown to us in a short period of time. This really muddies the concept of informed consent. It is in the best interest of physicians to clarify the side effects and different therapies available for patients with alopecia areata. Sometime later on in this FAQs you will be able to read about these side effects. Let me emphasize again this point. Accepting medical treatment from a physician is part of the collaborative decision making that we call informed consent. Whether it be steroids, PUVA, or irritants, the patient's decision to participate rests upon a complete understanding of the medical intervention, including, its purpose, benefits, risks and alternatives. If a doctor's schedule or lack of knowledge prevents him/her from providing this information, the patient should still be adviced about educational programs, patient representatives, social workers, layman support organizations, or books available on the subject.
Experimetal trials should be even more rigorous in providing details of the study to prospective participants. A good physician (not by a nurse, social worker or anybody else) will advise the patient of the following:
The purpose of the study, sponsor of the study (if any), results of previous related research, subject selection and exclusion criteria, justification for using a special population (e.g., AA vs. AU) and for placebo (again, if appropriate), study design, description of all of the procedures to be performed, risks and benefits to subjects (a risk/benefit analysis), the methods for recruiting and consent procedure, costs to the subjects for participating in the study, protection of patient's privacy, and provisions for managing adverse reactions.
The patient is also given written documentation for him/her to sign and then receives a copy of the document. The informed consent document has among many other things the following sections:
A statement that the study involves research, the reason why the person signing will participate, description of the benefits and foreseeable risks to the patient (e.g., cancer for those taking sensitizers), a disclosure of appropriate alternative procedures or treatments, a description of the confidentiality of records, an explanation whether compensation or medical treatment is available if injury occurs and, if so, what they consist of, an explanation of where further information may be obtained about the study itself and the research subject's rights.
If you don't have the above information when joining an experimental program, you haven't had the benefit of a proper informed consent- think twice before participating! There have been inumerable accounts, for instance, of adverse side effects related to steroids including bone loss, emotional lability, immunosuppresion and increased hair loss upon cessation of the drug. And those are just their good points :-) Because a physician prescribes it does not guarantee its safety. I think one of the most important words in any language is Ask. Look in the PDR or check it out at the web site: rxmed.com. Don't accept vague answers. Don't ever feel you are imposing yourself by asking questions that will make you feel more comfortable about the situation which you are living. This may sound cliche, but remember: There are no stupid questions, just stupid people unwilling to answer them. Life is full of questions that mold us into what we are. We build, grow and become different people by answering questions. Without our doubts we are not the person we know or become the person we can be.
The craft of the physician may be judged by the thoroughness of the history and physical examination. The following list provides a schematic of some of the things that a physician should do, or consider doing, when first examining a patient with alopecia. Subsequent visits may be shorter but the physician should always be vigilant to the appearance of other autoimmune conditions, of which, thyroid disease appears to be the most common.
Bad physicians won't practice by the above credo and may exemplify bad qualities such as:
A physician may be a good person, a dedicated and intelligent researcher, a sincere friend of all of us with AA, but still may not be someone I would recommend for a professional consultation. If a physician is going to make appointments with patients, there is implied expectations and obligations that go along with the visit. A generic Dermatologist may only charge about $35 for a visit and it seems he/she will give you the same advice as everyone else. Considering what it is worth in the long run there is no advantage in seeing a high-priced hair specialist.
Another statement by a patient:
“I just have to agree with you about going to the high priced "experts". I have a very nice md here in Schenectady who respects me, treats me like someone who understands the condition. He sends pts to me to talk with rather than giving them any kind of a speil himself. I went the route at one time of going to a leading expert in immunology who is NY City. He was unbelieveable. He walked in - looked at me and told me I had alopecia and that he could not help me. I looked at him and said I know what I have, I thought with all the other conditions you might be able to assist me. He said sorry no, you can pay the secretary on your way out and then he was gone. I was so angry I went into the washroom and assaulted a wall. Then I went shopping so that the trip would not be in vain. We did not have alot of money to throw around at that time but I just thought maybe an "expert" might know more. Yea sure...... I think there is a cure around somewhere waiting to be found but until I see the proof I do not bother with mds any more.”
It is interesting that although the last couple of decades has brought forth numerous advancements in the science of medicine, the art of practicing the same has lagged behind. Many of the complaints from patients in this list server would make me believe that their attending physicans lack the warmth and compassion that characterized some of our predecesors. It may be that many decades ago, physcians, lacking a cure for many condition, opted to offer support to their patients. A good physician used to exemplify the inscription on the statue of Edward Livingstone Trudeau; "To cure sometimes, to relieve often, to comfort always." Similarly, an older essay by Peabody (JAMA 88:877, 1927) said that "the failure of the young physician to establish this (personal) relationship accounts for much of his ineffectiveness in the care of patients." The best quality that a good physician may have is compassion, one who balances treating a disease with taking care of his/her patients.