128 Grief and Loss Across the Lifespan
male or female. DSD are relatively rare, affecting about 0.1% to 0.5% of people,
and the condition Molly has is even rarer, affecting about 1 in 100,000 people.
People may be diagnosed with DSD at any point in the lifecycle. Some manifest
at birth with obvious genital difference, in adolescence with a variation from
typical puberty, or even in adulthood, with difficulty conceiving a baby.
The biological impact of DSD varies depending on the particular diag-
nosis. For people who have a condition called congenital adrenal hyperplasia
(CAH), alterations in the hormones produced by the adrenal glands during fetal
development can result not only in genital difference, but also in low levels of
hormones essential for maintaining blood pressure, and can therefore be life-
threatening. Fortunately, most people with DSDs are otherwise healthy; for some
people, like Molly, a DSD can result in variations in puberty as well as infertility.
Visible physical variation among people affected by DSD also varies. No
person is born with both a penis and a vagina, but some are born with a larger
than usual clitoris or smaller than average penis. Some children have a penis
where the urethra opens on the underside, rather than at the tip, and some
children have genitals with structures that look in between a clitoris and a
penis and/or between labia and a scrotum. As people grow up, the mixture of
estrogen and testosterone the body produces may cause them to have a combi-
nation of usual male and female traits, like breasts and facial hair; others, like
Molly, may look totally typical.
The evidence base of the psychological impact of having a DSD as a child,
adolescent, or adult, is still emerging and often conflicting. Although many
people with DSD do not have diagnosable mental health issues, some do have
clinical psychological distress, often related to circumstances apart from the
DSD. Regardless, it is apparent that any person with a DSD diagnosis is faced
with the challenge of understanding and integrating this new information
within social contexts where DSD is often misunderstood.
Adolescence is a time of incredible change, and Molly is first and fore-
most an adolescent. Psychologically and socially, teens begin to differentiate
themselves from their families. This process requires the exploration of the ado-
lescent’s own distinct identity, characterized by strong identification with peer
groups and increasing distance from the family. Physically, teens experience dra-
matic maturation, and begin to experience and experiment with sexual feelings.
Molly’s feelings of loss can be understood as a result of the way a DSD
diagnosis disrupts these developmental tasks. Molly’s diagnosis concerns
deeply personal and private parts of herself, and yet circumstances compel
her to share the experience of being diagnosed with her parents. Like other
teens with DSD, she may need her parents to attend doctor’s appointments or
procedures with her. She may find herself having discussions with the doctor
and her parents about what the differences in her sex anatomy mean for sexual
relationships. Additionally, Molly may feel conflict between a desire to handle
the situation on her own versus a wish to rely on her parents to take care of her
as they did when she was younger. The diagnosis may also strain the family
system in addition to the changes it already faces with Molly’s adolescence:
her parents are likely to feel anxious about how their child will cope with the
diagnosis, guilty at not being able to protect her from the challenges of the
DSD, fearful of disclosing her diagnosis to friends or family, and isolated due
to a perception that there may not be other parents to support them.