Having a chronic illness can be isolating. It can be difficult to share vulnerable and sensitive information about yourself with others, or to find ways to manage the trauma and stress that can come from living with an illness. For people with alopecia areata, an autoimmune disorder that causes patchy hair loss, mental health support can be crucial.
This autoimmune disorder occurs when the body’s immune system mistakenly attacks healthy hair follicles. The hair follicles become damaged; hair falls out. While hair loss is the characteristic symptom of alopecia areata, each individual may experience unique hair loss patterns. Some individuals experience hair falling out in quarter-sized clumps in a few spots, while others have more significant hair loss. In rare cases, individuals may lose all of the hair on their heads and/or bodies. The emotional and psychological burden of hair loss should not be understated.
According to Tim Smith of HCP Live, people with alopecia areata often experience slow remission and are not satisfied with available therapies. Researchers questioned whether providing complementary therapies such as support groups could increase a sense of community and relieve the burden of mental health challenges.
Challenges of Living with Alopecia Areata
What are some of the emotional and psychological challenges faced by people with alopecia areata? For one, many people place a high social importance on hair. Losing hair, or having patchy hair loss, can cause social stigma, feelings of embarrassment or self-consciousness, and reduce confidence and body image. This may lead to anxiety and stress when people feel like they have to hide their hair loss. Since alopecia areata isn’t predictable, and hair loss can occur intermittently, people may feel frustrated and without control. Not all treatments work well, and many people require additional interventions, such as cosmetic solutions or wigs, leading to a financial burden. Finally, despite its prevalence, people with alopecia areata may not experience the same level of awareness and understanding as other conditions.
A Widespread Lack of Support
In a study led by the University of California – Davis’ Dr. Renee Haughton, researchers explored the potential use of, and experiences in, support groups for people living with alopecia areata. The cross-sectional research study sourced data from 781 individuals within the National Alopecia Areata Foundation listserv. Of these individuals, 510 responded to questions. 27.5% (140 individuals) stated that they had attended a support group at least once. This means that a majority of surveyed patients had never attended a support group.
People who did attend support groups were more likely to:
- Have severe hair loss
- Experience alopecia areata for longer periods of time
- Have higher quality-of-life satisfaction
These same individuals noted that attending support groups introduced personal benefits such as the ability to share their experiences with others who understood, less isolation and loneliness, and higher emotional support. People also felt that support groups were influential in increasing their knowledge and understanding of what it means to live with alopecia areata.
At the same time, only 4.3-8.6% of support group participants felt satisfied with their support group, compared to 27.9% of people who reported feeling neutral and 53.6% who reported feeling dissatisfied. This suggests room for improvement in both how often support group meets and how available they are for support. Additionally, this calls for the further spread of medical resources and information.
Ultimately, the study highlights how the alopecia areata community may not pursue support until their symptoms have progressed. Yet support groups can be invaluable in reducing isolation. The study emphasized the need for a feedback-driven approach to enhance participant satisfaction and support efficacy. One potential intervention is meeting more often.
Researchers also note that the 510 individuals may not fully represent the entire alopecia areata community.
