Alopecia​—Living in Silence With Hair Loss

As told by an alopecia sufferer

‘ALOPECIA?’ you wonder. ‘I don’t remember ever hearing about that disease.’ People who are plagued with it may be too embarrassed to tell you. They keep it a secret. I have alopecia, so let me tell you something about it.

Try to imagine the shock you would feel if you saw your hair suddenly begin to fall out. ‘How could this be happening? It can’t be true,’ you may say in disbelief.

Later, you learn that you are not the only one with alopecia. It strikes about 1 out of every 100 people, and it afflicts both men and women. Unfortunately, treatment of the disorder is frequently unsuccessful.

“After all, it’s only hair,” some people tell me. True. Yet, alopecia affects every part of my life, and adding to the burden, it is difficult to explain it to others. Why? Because the disease is shrouded in an aura of mystery.

For example, usually when someone names a disease, you immediately have a mental picture of just what that ailment is. Not so with alopecia. Its cause cannot be stated succinctly. And considering the way alopecia strikes​—quickly and without warning—​the victim often finds himself unprepared to discuss it. Thus, a person may lose not only hair but dignity as well.

What Is It?

Alopecia is a medical problem that we victims have no control over. It is not contagious, and therefore others cannot contract it from us. Victims will not die from it, but the emotional pain of humiliation, frustration, and embarrassment can become a challenging experience.

Alopecia should not be confused with ordinary male pattern baldness. Hence, when defining alopecia, some of us prefer the term “hair loss” to that of “baldness.”

The term alopecia areata refers to the condition wherein patches of scalp experience hair loss. This is the type I have. If all hair on the head is lost, the disorder is referred to as alopecia totalis. And if the disorder includes loss of all body hair, it is called alopecia universalis. For some sufferers, the disease never progresses beyond alopecia areata. Others experience spontaneous hair regrowth without receiving any treatment. Still others, however, lose eyebrows and eyelashes. This may lead to eye infections because there is no hair to protect the eyes from dust and sweat.

What Causes It?

Medical research indicates that alopecia is probably an autoimmune disorder, that is, an allergic reaction to some part of your own body. Another autoimmune disorder that you may be familiar with is lupus. The immune system of a person with alopecia mistakenly identifies the hair as a foreign substance. The immune system responds by sending killer T cells (lymphocytes) to the site. These cluster around the hair follicle and attack and destroy it. For an indefinite period of time, the hair follicle is prevented from producing normal hair growth.

Medical treatment is varied. At best, it takes a long time to get results, and often the results are not what were hoped for. The hair, for example, may regrow, but it may be very fine-textured and light in color. Frustration may come if the alopecia reoccurs and the treatment that worked one time does not work again. So the victim may end up going from doctor to doctor, trying different treatments. Alopecia may then become a financial as well as an emotional burden.

The medical community used to point to stress as the culprit. Remove the stress, they said, and the hair will return. So a victim perhaps wrongly believed that he had caused his own hair loss or, as some doctors suggested, that a marriage mate might have created the stress. Now, though, it is understood that stress is not the cause. The alopecia sufferer has no reason to feel guilty or to blame himself for his condition.

Challenges Faced

Hair loss alters appearance, and so alopecia sufferers are occasionally classed with certain groups. If a person has no hair, or what others consider to be too little hair, and wears it short as I do, observers may jump to the conclusion that one with alopecia is making a social or political statement.

Finding employment is always a challenge, but it is especially so for those with alopecia. Some potential employers are wary these days because of the fear of AIDS. Since those with alopecia have little or no hair, employers may wonder if they have AIDS. Alopecia, of course, is not the same disorder as AIDS. Others assume that alopecia sufferers are undergoing chemotherapy.

At times thoughtless remarks may be so devastating that we with alopecia fear leaving the shelter of our home. Rash advice from well-wishers can be painful too. They may say: “If I were you, I just wouldn’t worry about it. I would just laugh it off.” Easier said than done. Wise King Solomon realized that “even in laughter the heart may be in pain.” (Proverbs 14:13) Since alopecia can change the way we look so radically and with such suddenness, we appreciate it when we are not reminded about our appearance.

Why Not Wear a Wig?

“Why don’t you wear a wig? I would,” people may suggest. But most wigs are designed for women who, for fashion reasons, want a change of hairstyle. They are simply not made to be worn over a head that has no hair. Wigs designed especially for alopecia sufferers are usually more costly, and not everyone can afford to buy and properly maintain them.

Women with alopecia are more successful in finding a proper wig than are men and children. This is because women have a greater choice of hairstyles. Some women, though, prefer to wear attractive scarves instead. Most wigs designed for men, it seems, do not look natural. And then there may be the questions: ‘When do you wear the wig? All the time? Do you wear it when at home alone in case someone might unexpectedly visit?’ So, for a number of reasons, alopecia victims may not wear wigs. On the other hand, the majority of victims experience hair loss in a limited area that can be covered by surrounding hair and have no reason for considering a wig.

How I Cope

Alopecia victims may occasionally turn inward and become reclusive, feeling bad because of the way others may perceive them. During difficult moments, it is important to have a clear focus on the priorities of life and to remember that it is what we are on the inside that wins the respect of others.

Therefore, I live one day at a time and try not to worry unduly about the next so that my problem will not become all-consuming. I find helpful the Biblical adage: “Never be anxious about the next day, for the next day will have its own anxieties.”​—Matthew 6:34.

True, many other people have worse problems. Yet, for those who have alopecia, support and understanding from others is often missing. Until a few years ago, they had little opportunity to discuss their feelings with others who suffer from alopecia, but now there is a network of support groups throughout the United States. Through these groups those with alopecia can get the help of qualified and informed doctors, who share new medical breakthroughs and expose old myths.

Sometimes I cannot help but think how different my life might have been. And yet I enjoy the privilege of being one of Jehovah’s Witnesses and can thus give of myself to help others learn about God’s beautiful promises for the future. (Revelation 21:3, 4) Another help to keep me going are the strengthening words found in the Bible at Psalm 55:22: “Throw your burden upon Jehovah himself, and he himself will sustain you.”

[Box on page 13]

An Alopecia Sufferer

The actor Humphrey Bogart was one. His wife, Lauren Bacall, wrote: “He’d noticed a bare spot on his cheek where his beard was not growing. The one spot increased to several​—then he’d wake in the morning and find clumps of hair on the pillow. That alarmed him. It’s one thing to be bald with a rim of hair, an actor could always wear a hairpiece, but without the rim it would have to be a full wig. The more hair fell out, the more nervous he got, and the more nervous he got, the more hair fell out. In the last scene in Dark Passage he wore a complete wig. He panicked​—his livelihood hung in the balance. A visit to the doctor was in order. . . . The verdict was that he had a disease known as alopecia areata.”

[Box on page 14]

What Treatment Works?

Alopecia can be treated by cortisone injections in an effort to interrupt the attack. Cortisone is a drug that shrinks the swelling in the area of the hair follicle so that it can receive blood and nutrition.

Another treatment is DNCB (dinitrochlorobenzene). This is an acid that is applied directly to the affected area in an attempt to cause an artificial allergic reaction​—not unlike a bad case of poison ivy—​in hopes of distracting the lymphocytes. The resultant rash may be extremely painful for some.

The topical use of a drug called minoxidil has also been touted. Although originally developed to treat high blood pressure, as a side effect, this drug was found to cause hair to grow. Yet, as with most treatments for alopecia, the success rate has been disappointingly low. Most of the news coverage has been about its use in treating male pattern baldness, not alopecia.

Over 16 different drugs and treatments are prescribed for alopecia, and each must be used regularly for an indefinite time period. Since it often takes six months to determine whether a particular drug will be effective, treatment can be time-consuming and frustrating. Thus, at present, there is no real cure for alopecia.