Living with Alopecia Areata

Alopecia areata is not medically disabling; persons with alopecia areata are usually in excellent health. But emotionally, this disease can be challenging, especially for those with extensive hair loss. One of the purposes of the National Alopecia Areata Foundation (NAAF) is to reach out to individuals and families with alopecia areata and help them live full, productive lives.

There are thousands of successful, well-adjusted, contented people living with this condition. The emotional pain of alopecia areata can be overcome with one’s own inner resources, sound medical facts, and the support of others. Sometimes professional counseling from a psychiatrist, psychologist, or social worker is needed to develop one’s self-confidence and positive self-image.

Alopecia areata can be challenging for those who have the disease and for their families. Although the illness impact people differently, there are some common experiences among those affected. For example, you might be thinking that no one knows or understands what you are going through. Many people with alopecia areata think this and then feel immense relief when they finally meet someone else with alopecia areata or when they learn of the National Alopecia Areata Foundation (NAAF). In addition to having common thoughts and feelings about alopecia areata, there are also common psychological reactions to the disease.

People who have alopecia areata and their family members often experience a variety of feelings and frustrations. Reactions to the disease include the following:

  • Alone, withdrawn, and isolated
  • Loss and grief
  • Fear that others may find out you have the diseasse
  • Fear that others may find out that you wear a wig
  • Sadness and depression
  • Hopelessness
  • Anger
  • Embarrassment
  • Guilt or self-blame that you somehow brought the disease on yourself
  • Guilt related to how the disease is affecting family members and loved ones
  • Frantic in regard to searching for an answer or cure (going to extremes)
  • For parents, guilt that they may have genetically contributed to their child’s disease
  • For parents, helplessness that they cannot stop the disease or help ease their child’s pain
  • For siblings and other family members, shame and anger because the disease has also affected their lives

How do you know if you need counseling?

For many people, alopecia areata is experienced as a trauma. The disease can also be traumatic for the parents or other family members of those who have the disease. Many people who have experienced trauma find it helpful to talk with a mental health professional who can help them work through their feelings and learn coping skills. A good way to know if you need counseling is to examine how alopecia areata is affecting your life.

Although experiencing the psychological reactions mentioned above is common, if your feelings are intense or overwhelming, or if your feelings and reactions are persistent, counseling should be considered. If alopecia areata has caused a dramatic change in your lifestyle, for example if you  no longer participate in activities that used to bring joy to your life, if you are missing work or school frequently, or if you no longer feel you can talk or reach out to those who are close to you, we suggest that you may need counseling.

We often recommend alopecia areata support groups; often these groups alone provide sufficient help. However, counseling from a trained professional can be beneficial as well. Counseling gives you more time to focus on your own specific experiences and provides a safe environment in which you can share confidential matters. This will enable you to discuss issues that you may not want to discuss in front of a group.

Finding a Mental Health Professional

One way to find a mental health professional is by asking your physician for a referral. Another way is to call your local mental health association or crisis hotline and ask for a referral. You might also want to ask a friend or fellow NAAF support contact who has been in counseling for a personal recommendation.

NAAF provides information and resources to try and make your experience with alopecia areata easier. 

Our Cosmetic Guide: Tools for Everyday Beauty provides useful everyday beauty tools and tips for individuals of all ages.

Our Ascot Fund provides financial assistance to help adults and children with alopecia areata purchase a hairpiece.

The Alopecia Areata Marketplace provides a safe, private way to shop online from your home for products relevant to someone with hair loss.