Reducing Stigma Through Peer Support Group

The phone rang at midnight, and Sten
Johensen answered it, with a good idea of
who it might be.At the other end of the line, a
familiar voice was frantic and crying. “They
w o n ’t give me my meds!” It was Sten’s good
friend, whom we will call Sue, who had had
shoulder surgery that day. Sten had been with
her at the hospital before the operation, after
her recovery, and in the evening for the nursing
change at 8:00 PM. He had accompanied
her all day not only as a friend, but also as her
advocate, to assure that she would be given
her psychiatric medications without interruption
due to oversight or negligence. Sue was
on a strict regimen of medication for her bipolar
disorder, post traumatic stress disorder,
and dissociative identity disorder. At each
step of the pre- and post-surgical procedures,
Sue and Sten had asked for assurance that the
meds would be administered at the designated
times, as prescribed by Sue’s psychiatrist.
They spoke with the night nurse to make her
aware of the situation.
During Sue’s midnight phone call, that
same nurse said the medications weren’t listed
for Sue, nor had then been provided, and
she couldn’t give them anyway without the
doctor’s orders. Sten then called a night-duty
psychiatric nurse at the psychiatric ward
where Sue had often been treated. The nurse
there called Sue’s psychiatrist at home (at 1
AM), who then called the hospital staff to
demand the medications for Sue.
Sue’s pleas to the nurses on duty had
gone unheeded. The reason? Stigma.
Sten knows all too well about stigma and
what it can do to people who have emotional
difficulties or disabilities. He is a facilitator
for the Depression and Bipolar Support
Alliance of Urbana Champaign. DBSA is a
nationwide network of peer support groups
for people who suffer from depression or
Bipolar Disorder. The local group meets
twice weekly and the members share common
experiences, problems and possible
solutions. Many of the issues discussed
involve the ubiquitous, subtle and not-sosubtle
forms of stigma. I sat down to talk
with Sten about some of the things the group
can do for its members.
“Family is not always the best support”,
he said. “Sometimes family
relationships carry with them
baggage, which can actually
add to the problem.” In such
cases, a peer group can provide
an understanding
refuge. Many group members
show obvious distress
after spending time with
their families and sometimes after a doctor’s
appointment.
One might wonder how doctors could be a
source of distress when in fact they are supposed
to be the source of healing. Sten notes
that some DBSA members often find their
doctors to be impersonal in nature, condescending
or unwilling to listen. He reports
that many members come back from appointments
feeling deflated and beaten down.
They feel they are not taken seriously and if
they have a complaint, it is just attributed to
their emotional condition. This is a big area
of vulnerability where stigma is the culprit.
So, if a patient is having difficulties with
a doctor, why not visit another doctor? This
would be simple if everyone had a health
care plan that treated mental illness the same
as physical illness. This, however is rare,
even with the best of plans. Insurance companies
often dictate which doctors a patient
can see and which medications they will pay
for as well as restrict the number of therapy
sessions available per year. In many cases,
insurance itself is an issue. Some DBSA
members are on public aid, while some have
no coverage at all.
In regards to treatment, there are many
breakthrough therapies and medications to
treat depression, but only 15.3% of the people
with mental illness in the United States get
what would be described as adequate treatment
(C h a rtbook on Mental Health, 2006)
There is treatment available for low
income persons but there is usually a waiting
list. Some members of DBSA have had to
wait up to 6 weeks to see a doctor. Unfortunately,
depression can be a downward spiral,
and often by the time a person
seeks help or someone
assists them, they may be in
acute psychological distress.
For someone clinically
depressed, a day can seem
like a lifetime, let alone
waiting weeks for the next
available appointment.
Many people end up in the emergency room
with a crisis because of this lack of immediate
support.
Sten has found that some doctors in the
community will help out in an emergency
situation. He himself has also escorted many
patients to the hospital.
In the case of physical disability, it may
take months or years for someone to acquire a
rightful disability claim.Most are turned down
2 or 3 times before they become eligible. T h i s
is especially true when it is a first time emerg
e n c y. Sten told me that many DBSA m e mbers
have had to hire lawyers to get a fair
shake at disability. One of the benefits of the
peer group is that members can advise each
other on good disability lawyers in town.
In addition to the difficulties in obtaining
treatment, a client may also face stigma during
treatment. If a person is on public assistance
and has made it through the wait list, she will
then be assigned a doctor.
Unfortunately, Sten has found that DBSA
members commonly have many problems
with their doctors. In many cases a member
will tell the doctor that their medication is
producing side affects or not working at all,
only to be completely dismissed. Advocates
have tried to go with these clients to give
their complaints credibility but doctors will
often, and inexplicably keep these people
from joining them in the office.
If a client is unhappy with her doctor, she
may file a complaint, but it takes another 6
weeks to get a different doctor who still may
not be competent. This can be devastating if
medication side effects are a problem or the
medications are not helping at all. To complicate
matters, many medications for
depression take weeks to take eff e c t .
Although most people in the mental health
community work very hard to meet the needs
of the clients, the uncaring nature of some of
the doctors and the system itself can be
harmful to people with depression.
F o r t u n a t e l y, there is some good news.
Sten sees the emergence of a new way of
treatment coming from the certain psychiatrists
who do not base their practice on autocratic
ideals. They listen when a client is concerned
and work with the individual to
improve the effects of treatment. I asked Sten
how many of these doctors were available
and although he claims no statistics, from
what he has heard from members, about 15%
of them have this type of treatment.
There is a long road ahead and a great need
for better mental health care and delivery in
this country. Issues of stigma have to be
addressed as they are linked to the illness
itself.With so many medications and therapies
available, acquiring good treatment and being
treated with respect are the main issues at
hand.With improvements in these areas, combined
with peer groups willing to advocate for
each other, we may be on the road to recovery.