Depression: The Unwanted Cotraveler
–
An Advocates’ Perspective
National Institute of Mental Health Public Day
March 2001
Lydia Lewis, Executive Director of National DMDA
Thank you. On behalf of the 23 million Americans currently
coping with a mood disorder, I want to particularly thank Dr. Hyman
for his commitment to finding better screening tools, better
treatments, ways to limit risk factors and ultimately a cure. The
work done this past weekend clearly shows NIMH’s dedication to help
people with mood disorders and their families. We applaud their
current efforts but ask for more - - Research must be significantly
increased and accelerated so that the suffering of so many people can
end.
Depression and manic depression are
really tough to live with and the situation is made all the more
difficult by the vast ignorance, stigma and discrimination surrounding
them. Everything we do to openly discuss these illnesses, and the
impact they have on our lives, helps to break down these roadblocks to
understanding and acceptance.
A while ago the American Cancer Society
launched a successful campaign to educate us about the seven warning
signs of cancer. I’m certain the majority of us here today can
name most of these symptoms – a wound that won’t heal, a change in a
wart or a mole, a cough that won’t go away, to name a few.
But how many of us can name five symptoms
of depression or five symptoms of mania? Think about it.
When we don’t know what we’re looking
for, it’s all the more difficult to find.
To exacerbate the situation, symptoms
such as irritability, the inability to concentrate, pessimism and
difficulty in sleeping are experienced in every day life. When is
it just a bad day and when is it clinical depression?
Then, there’s the widespread belief
that depression is a sign of personal weakness, not a legitimate
illness, and that it’s something we can "snap out of" or
treat on our own. Finally, add the highly stigmatizing beliefs
surrounding antidepressant medications – that they’re habit forming
and alter personalities – and you can see the challenges we face.
A recent National DMDA survey found that
78% of people with depression have not experienced complete control of
their illness in the past two months – 78%. If a chronic illness like
diabetes wasn’t completely controlled for three-quarters of diabetics,
there would be a public outcry. How come we are all so silent when
it comes to depression?
There’s a real problem here. Less
than one-third of those with depression are receiving effective
treatment. Despite all the excellent work done at NIMH and by
researchers in universities across the United States, if people and
their doctors can’t recognize symptoms or if people refuse to get
treatment, depression will remain highly undiagnosed and untreated.
Depression is a real illness that
responds well to treatment -- this isn’t an easy message to deliver.
All of us have to do our part in spreading the word that when you have
depression, you are truly ill and need to seek professional care.
We need to break the powerful hold shame has on this illness if we are
going to see any measurable progress.
People very ill with mood disorders have
said things to me like: "Well I’ll go to a doctor, but
I’m not going to a psychiatrist." And "I thought finding out
I was an alcoholic was the worst thing that could happen to me.
Well, I’d much rather be an alcoholic than have manic
depression." It’s difficult to understand why a person would be
so resistant to getting help when depression can be so devastating.
Untreated or undertreated depression can
take a considerable toll -- when we surveyed people with depression,
nearly one in five had been hospitalized for their illness and one-third
reported spending at least one day in bed in the past month.
Depression is the #1 cause of disability in the United States today.
In addition, according to the Journal of the American Medical
Association, 95% of all suicides occur at the peak of a depressive
episode.
It’s astonishing how much needless
suffering we endure when we don’t seek help. So, why don’t we?
We’re dealing with an illness that
people don’t recognize, don’t believe is real and that is so
stigmatized that people won’t go to a doctor for help. But let’s get
past all this pessimistic thinking, and consider what happens once a
person – or their family member – suspects depression. Let’s
assume they have health insurance. And let’s assume that this
health insurance covers psychiatric illnesses. (Well, we might as
well have total optimism!) What happens then?
We know that the majority of people with
depression are diagnosed and treated by their primary care doctor. A
recent National DMDA survey of 1,000 patients and nearly 900 primary
care doctors painted a clear picture of the current situation.
One third of the doctors reported
diagnosing nearly all their patients with major depression.
Another third said they diagnosed half of their patients – so 71% of
primary care doctors diagnose at least half of their patients with major
depression. What’s troubling is that nearly one-quarter of these
doctors reported that the initial exam pertaining to a diagnosis of
depression lasts 15 minutes or less.
Three-quarters of the primary care
doctors believe it is somewhat or very easy to diagnose depression.
By contrast, only one-quarter felt it is somewhat or very easy to
diagnose mania.
While a significant percentage our survey
patients have been treated for their depression for long periods of
time, a significant number are achieving less than the best treatment
outcomes.
We believe that people with depression
should be treated to complete symptom relief with minimum side effects.
More than three-quarters of the patients reported that their depression
hadn’t been completely controlled in the past two months.
Our survey offered some insight into why
sub-optimal treatment occurs so frequently.
Nearly half the patients reported having
problems with medication side effects and side effects are the main
cause for treatment non-compliance. In fact, more than half told
us that side effects caused them to stop taking an antidepressant.
Another third reported that side effects caused them to change the way
their antidepressant was taken.
Patients cope, both successfully and
unsuccessfully, with troublesome side effects because 40% incorrectly
believe that they can’t be avoided so they put up with them.
Doctors need to fully explain possible side effects so that patients
don’t become frustrated, lose hope and stop treatment prematurely.
This isn’t happening.
To state the obvious, we can’t get well
or stay well without following our treatment plans. Do not assume
people will choose to take a medication that can prevent psychosis if
that medication makes them gain 50 pounds.
We need NIMH and the pharmaceutical
industry to be vigilant in their research efforts to develop medications
with better side effect profiles. We also need medications with less
risk. Lithium has saved thousands of lives but it can cause
lithium poisoning. Treatment options should not include
medications with the potential to cause seizures or fatal rashes.
Two-thirds of the primary care physicians
stated that patient resistance is the greatest barrier to treatment.
This might explain why they would hesitate to mention side effects when
prescribing an antidepressant. Or perhaps they did talk about them
and the patient simply didn’t hear.
Doctors need to listen more closely to
their patients, while at the same time confirm that patients understand
what’s being discussed. And patients must learn everything they
can about their illness so that they can determine whether or not they
are receiving good treatment from their doctor.
The most favorable recovery will occur
only when the patient and doctor have a collaborative relationship –
an equal partnership. The patient must be empowered to have the
significant voice in treatment decisions. Right now, this isn’t
happening.
It’s disturbing that so many doctors
cited patient resistance as the #1 barrier to recovery because it puts
the responsibility for getting better soundly on the shoulders of the
person who is ill. What role does the doctor have in helping their
patients overcome ignorance and shame?
Because life improves in so many ways
when depression is treated, it’s frustrating that so few people are
being helped.
When first diagnosed, one-third of the
patients felt afraid. At the time of the survey, that percentage
dropped to 12. Only 8% are embarrassed about their depression while at
the time of diagnosis slightly more than one-quarter were embarrassed.
Two out of ten were angry when diagnosed. Now only one in ten is
angry. At the start of treatment 72% of people diagnosed with bipolar
disorder reported recurrent thoughts of death or suicide. After
being treated for a while, the percentage dropped to 43. Think about the
lives saved by treatment.
It’s important we put a human face on
depression so that all of us understand its devastation. I’d
like to end by reading part of a letter I recently received because this
young girl’s words sum it all up:
"I’m 13 years
old and I am really depressed. I love the computer. I chat a
lot. I love chatting but I think I am a little anti-social.
I don’t like people that much and I stay inside the house all day.
I have had friends say they were going to kill themselves. One
did. He had been my best friend for three years. I loved him
so much I cried and begged but he did it anyway so I am depressed about
that. I think suicide would do it. I haven’t told my
parents yet. I’m afraid they will take my chat away. My
parents are at work all day so I’m left alone. Every day I think
of killing myself. I’m stuck. I need your help and I need
it fast. Please help me before I end my life forever."
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