Advocacy Committee Meets Congressman John Linder - NAMI

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Loss. It’s something most of us
are familiar with, or eventually
will be at some point in our lives.
Inevitably we are destined to
experience the pain associated
with the loss of a loved one for
example. In fact, one might
even say that loss is an integral
part of life and the human
condition. We cannot escape it.
Subsequently, we must stand
and face our grief and loss,
following the rituals society has
set forth for us, ultimately
allowing us to come to terms
with and make peace with the
pain we have experienced,
thereby allowing us to find a
sense of closure.
There is another type of loss,
however, that often does not
find closure. This is the sense
of loss experienced by the
families of individuals with
mental disorders. This feeling
of unresolved grief and loss is
often referred to as “ambiguous
loss.”
In the case of a mental disorder,
the family members of the
diagnosed individual often feel
as though they have lost that
individual to the disorder.
Essentially the person they
knew is dead, replaced by a
stranger with their loved one’s
face. The sense of grief and
loss experienced by the family
members of an individual with a
mental disorder often goes and
remains unrecognized by others
around them. This leads to a
feeling of “ambiguous loss.”
Ambiguous loss may be defined
in three different ways: 1)The
loss is characterized by a lack of
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clarity or confusion surrounding
the loss itself. There is an
absence of certainty regarding
exactly what is happening, or
when the uncertainty may end.
The events surrounding this
type of loss are frequently
unclear; the status of the person
is uncertain, and the return of
the person is hoped for, but
ultimately unknown. 2)The
event of the loss is clear, but the
perception of the loss is
unclear. The loss itself is
basically clear, but the family
may be unwilling to accept the
loss. An example of this is a
physically present person who is
psychologically isolated from his
or her family due to a mental
disorder. This isolation is the
result of the family’s inability to
accept the nature of the
individual’s disorder. 3)The loss
is unclear because it is not
recognized, accepted, validated,
or ritualized by society. These
types of losses are also known
as “disenfranchised losses.”
The absence of societal rituals
or supports exacerbates the
sense of uncertainty and
ambiguity due to a general lack
of support from the community
at large.
The psychological absence or
differences in the mental
faculties of the diagnosed
individual frequently perpetuate
the feelings of loss among
family members. Loss of the
diagnosed individual as the
family knew him or her, loss of
the hopes and dreams of the
person the individual could and
should have been, and the
changes and disruptions of the
individual’s and family’s life and
relationships all contribute to the
family’s sense of loss and grief.
The family’s grief is further
intensified by the societal stigma
so often attached to mental
illness. Additionally, family
members are constantly
reminded of their loss as they
see the diagnosed individual
each day. All of these aspects
ultimately combine with the fact
that there are no symbolic
rituals that ordinarily support a
clear loss – such as a funeral
following the death of a loved
one. The lack of any societal
customs surrounding the sense
of loss associated with mental
illness leaves the family in a
state of limbo. The family’s
experience remains unverified
by extended family members,
friends, and the community at
large, so that there is little or no
validation of what they are
experiencing and feeling. This
creates a sense of isolation in
which family members feel
unsupported, separated,
unheard, or even dismissed. As
a result, feelings of anger,
frustration, sadness,
disappointment, and guilt begin
to build up as the family
members either begin to blame
themselves or the diagnosed
individual. This leads to feelings
of disbelief, of things being
unreal and not wanting to know
and not wanting to believe along
with wishing that things were not
true. There is often a strong
yearning that things could go
back to the way they were
before.
The sense of isolation
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(Continued on page 6)