Living with alopecia areata
Because hair loss and regrowth from alopecia areata is unpredictable and sometimes cyclical (comes back again and again), having the condition can be frustrating and emotionally challenging for many people.
Even though reactions to the disease are different for everyone, there are some common emotions that many people who have alopecia areata and the people around them say that they experience. These include feelings of grief, anxiety, loss, fear, embarrassment, loneliness and anger.
Living with alopecia areata can bring up some difficult emotions
Understand the kinds of emotions people with alopecia areata often feel, including fear, loneliness and even anger
Learn more about healthy ways to live with alopecia areata, like finding support in a group setting
See how alopecia areata can impact family and loved ones and learn some new ways to cope
Connect with community
Forming a community with people who share your and your family’s experiences of living with alopecia areata, is a great way to develop relationships with people who understand what it is like to live with your condition. Connect with people by joining a support group or attending the next NAAF conference, where people of all ages and backgrounds come together to share their experiences with alopecia areata. Attending a local awareness event is another way to connect with the community.
You’re in good company
People who have alopecia areata and their family members often experience a variety of feelings and frustrations living with this disease. Your experience as an adult with alopecia areata might be very different than that of a child. Your spouse or other loved ones might be affected by your condition differently, too. Still, there are some common reactions to alopecia areata that most people who have the disease say they experience.
Common Emotions with Alopecia Areata
These include feeling
- Loneliness, withdrawal and isolation
- A sense of loss and grief
- Sadness or depression
- Guilt or self-blame
Parents may feel
- Guilt that they caused their child’s disease by passing on the wrong genes
- Helpless in finding a cure for the disease, or in easing their child’s difficulty in living with the disease
- Grief and loss associated with the loss of a child with hair
- Anger at schools, doctors, bullies
Siblings and other family members sometimes experience similar feelings
- Shame or anger because the disease has also affected their lives
WAYS TO COPE
Many people find that the support of a group or an individual who also has alopecia areata is helpful in processing the emotions connected to living with the disease. You can also meet others who have alopecia areata at the Annual NAAF Conference and local awareness events.
People with alopecia areata often turn the corner, reach acceptance, and turn it into something positive in their lives. If daily functioning is impaired or you have had feelings such as anger, loneliness, isolation and sadness for more than several weeks, or they are overwhelming or seem too difficult to manage on your own, you may want to seek professional help to manage these feelings.
Knowing when to seek professional help
If the feelings you or your loved one have about your alopecia areata are overwhelming, or seem too difficult to work through on your own; if your daily functioning is impaired; if you or your loved one are frequently missing school or work, or seem isolated from friends and family by choice — you may benefit from the support and guidance of a professional counselor (such as psychiatrist, psychologist or social worker). You can contact your doctor for a referral to a counselor who may specialize in grief and loss or works with patients who have an autoimmune disease like you do, or ask a trusted source like a friend or a family member for a recommendation. You can also call your local mental health association/crisis hotline for advice on counselors who may be a good fit for you and your condition.
Does alopecia areata affect children, women and men differently?
People of all ages, including children, and both genders can develop alopecia areata. Everyone who has alopecia areata will experience the disease in a slightly different way, though there are some common symptoms that most people with alopecia areata will have at some point — depending on which type of alopecia areata they have and how severe their hair loss is.
CHILDREN WITH ALOPECIA AREATA
Children who are diagnosed with alopecia areata go through different stages of awareness and acceptance of their disease. Children ages five and under appear to experience very little emotional impact as a result of their condition. As they grow and change, however, it may become more difficult for them to accept their alopecia areata, which may impact their self-esteem and social interaction.
WOMEN AND MEN WITH ALOPECIA AREATA
Both women and men who have alopecia areata confront changes in their physical appearance as a result of hair loss. In our culture, hair is a symbol of youth and good health, so it can be equally difficult for both women and men to experience the loss of hair — especially on the scalp, and face (eyebrows and lashes).
Unlike children with alopecia areata, teens and adults have usually established many relationships and have formed their identity and place in society. This can make it much more difficult for them to cope with their disease. It can be hard for teens and adults to open up to others about their alopecia areata and how it makes them feel. As a result, they may experience stress or anxiety in their relationships with friends, family members and loved ones.
NAAF is a valuable resource for finding dermatologists who treat alopecia areata, getting connected to support programs, and finding products and accessories that can help both women and men protect their skin and address hair loss.
Learn more about
- Treatment options and challenges
- Support groups and counseling
- Guide to Tools for Looking Your Best
- Products and accessories marketplace
- Financial assistance for purchasing a hair piece
Alopecia areata and the workplace
Deciding whether or not to discuss your alopecia areata at work is a decision that only you can make. For many people, it depends on their particular work environment, how close they feel with their co-workers and if they feel safe and supported in discussing their condition with others. Talking about your condition may mean that you will have to provide some amount of education and information to your co-workers, so that they better understand what alopecia areata is and how it impacts your life.
Alopecia areata and relationships
Opening up to a potential partner about your alopecia areata can be stressful. Some people choose to do this right at the beginning of a relationship with someone, while others choose to wait until the relationship has evolved to a deeper level of trust. When you choose to open up about your condition with a potential partner is up to you. Let your comfort level be your guide when deciding when is the right time to disclose your condition.
If you are unsure about how to talk about your alopecia areata with a partner, please contact the NAAF office by phone, 415-472-3780, or email, for resources and assistance.