-
-


Back to Speeches and Testimony


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."

-
 

Site last updated: May 30, 2006

Home | Need Help? | Join our Mailing List | Search this Site 
Site Map
| FAQs | Terms of Use and Privacy Statement | Contact Us  
Make DBSA Your Home Page | Add DBSA To Your List of Favorites   
Why You Can Trust Information on This Site

© 2005 Depression and Bipolar Support Alliance. All rights reserved.
This site is for educational purposes only and is not to replace the advice 
of a healthcare professional


We subscribe to the HONcode Principles of 
the HON Foundation.  Click to verify