130 Grief and Loss Across the Lifespan
Many people with DSD, especially those who have been recently
diagnosed or informed of their diagnosis, do not have the tools to be able to
determine whether, how, and when to explain to friends what the diagnosis
is and what it means. The intimacy of the body parts it involves may create a
sense of embarrassment; further, especially where there is visible genital dif-
ference or in families where sex is not discussed openly or positively, individu-
als with DSD may feel a deep sense of shame and wrongness. Sometimes this
shame is reinforced for people by their family’s anxiety over the condition, the
fascination with which their medical providers treat them, or a sense of being
traumatized by medical treatment. In concert, these factors can cause people
with DSD to have a profound sense of loneliness, isolation, or even freakish-
ness, a loss of a sense of belonging in the world.
Fortunately, many people with DSD do live happy, healthy, and fulfilling
lives, particularly with support and resources to help them understand and
process the losses they experience. Mental health providers can help people
with DSD first and foremost by evaluating for and treating any associated
psychiatric illness, like depression, anxiety, or PTSD. Additionally, mental
health providers can model acceptance of the individual and offer validation
and normalization of the losses and associated feelings. Helpful interventions
include assessment of the understanding of medical facts, practice disclosing
the diagnosis to others (including role-playing, and development of language
and metaphors for biological processes), and a safe space to discuss issues of
gender identity and sexual expression. The therapeutic space can be one in
which the individual comes to understand the impact of the diagnosis and
allows for integration of the condition into one’s developmental path.
Contact with other people affected by DSD can be vital and even life-
saving. This takes many forms, ranging from viewing television programs or
documentaries featuring people with DSD to attending support group meet-
ings. Groups also offer contact by phone, e-mail, and through social media to
provide support that is accessible and on the individual’s own terms.
Molly will find a way to make sense of what she is feeling. To do so, she
may use a therapist, work with her parents, or find and communicate with a
community of young people with AIS on Facebook and in person. Beginning
to tell her story to her friends and family and gaining positive, reassuring
responses will mitigate her sense of loss greatly, strengthen her family and
friendship relationships, and empower her to seek romantic relationships.
Although the loss of her fertility and ability to meet a specific definition of fem-
ininity will remain, she will experience all the gains that can come from having
a DSD, including a broader community, a richer sense of herself, and a more
complex understanding of all the ways in which people embrace difference.ResourcesAIS-DSD Support Group: http://www.aisdsd.org
Advocates for Informed Choice: http://www.aiclegal.org
Beautiful You MRKH Foundation: http://www.beautifulyoumrkh.org
CARES Foundation: http://www.caresfoundation.org