“The experience of living with CAH, whether as a parent or individual, can evoke a complex mixture of emotions and challenges, influencing everything, daily routines with social connections and mental health,” explains Cindy Buchanan, PHD, approved clinical psychologist and associate professor of psychiatry and surgery at the University of Colorado School of Medicine.
The feelings of anxiety and frustration are common, due to the physical changes that accompany the condition, such as acne, early puberty, rapid growth and excess body and body hair in girls. The task of managing daily drugs to treat CAH, as well as the general fear of other possible health complications – shortened size in men and irregular periods as well as male body features and infertility in women – can also affect mental health.
“Other challenges for people with CAH understand the fear of the adrenal crisis, frustration, isolation, feelings of helplessness and hypervigilance,” explains Dr. Buchanan, who works with children managing chronic conditions such as CAH.
Parents of children with CAH have their own concerns, because the genetic nature of CAH can contribute to self-accusation. And, as for any chronic disease, a parent can feel emotional tensions caused by visits to frequent doctors, financial charges due to medical treatment and missed working days and family guilt if their other children and partners receive less from their time and attention.
“Parents can also have concerns about the future of their children, including questions about fertility potential, the impact of hormonal treatment on growth and development, and how their child will sail on social relations and independence,” explains Buchanan. “And they can fear making medical mistakes or worrying that their child feels different or isolated.”
But there is a good side to deal with a condition such as Cah too, she adds. In the journey of CAH management, “many families and individuals also discover forces, resilience and empowerment through knowledge, increased family ties, adaptability, feeling of control, connection, advocacy and deeper appreciation of their health and well-being.”
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