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Like most of us, Mark Lukach thought mental illness would never be part of his own life, or touch the lives of those he loves. But for the past seven years, Lukach and his wife Giulia, who was diagnosed with major depression with psychosis and eventually bipolar disorder, have been navigating a brand new world.
It’s a world where the role of husband has often been relegated to that of caregiver, and one in which the role of wife has often been redefined to that of patient. It is also a world in which frightening delusions, hospitalizations, ongoing treatment, and myriad medications sometimes overshadow the joy of a love story that began back in college.
But Mark, Giulia, and their son Jonas, who turns 5 in just a few weeks, have also made a world in which unconditional love plays just as important a role as good medical care.
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“People with mental illness deserve dignity, respect and acceptance,” said Lukach, a high school history teacher and author of the memoir, "My Lovely Wife in the Psych Ward."
There’s no doubt that medicine has made significant strides in the treatment of mental illness. Society, too, has come a long way in its own understanding of how mental illness affects both patients and those who love them.
Dr. Jennifer Payne, a noted researcher and clinician who directs the Women's Mood Disorder Clinic at Johns Hopkins Hospital, told TODAY both medicine and society still have a ways to go.
Everyone seems to have some experience with mental illness, either personally, or with a loved one, friend or co-worker. Is it possible that mental illness is even more common than what statistics show?
Payne: That’s a hard question because the statistics we use are based on interviews and people meeting certain criteria. But what is clear is that psychiatric illnesses are very common, much more common than most people actually think. But many people don’t recognize its prevalence because, in actuality, it’s still not talked about a lot, and that’s true whether you live in a big city or a small town.
But hasn’t there been a sea change in terms of stigma?
Payne: I’ve been involved in mental health for 20 years, and yes there’s been more acceptance and more of a stigma reduction. But it’s still too little acceptance and too much stigma.
Have you seen stigma first-hand?
Sure, professionally, but even personally. My daughter required hospitalization for psychosis, and fortunately she is doing really well and is attending college. When she required inpatient treatment, I brought her to Johns Hopkins, and I remember a few people saying to me that I was brave to do that. The message was I was brave to do that because this is where I work and people know me.
I remember thinking that the word “brave” was an interesting word choice. No one would have said I was brave if she had cancer or appendicitis. They would have said that of course I would seek treatment for her at Johns Hopkins.
The point is that mental health disorders, problems that affect the mind, should not be viewed any differently than diseases that affect the body. We aren’t there yet, but once that happens, only then will stigma will be reduced even more.
Should people be defined by their specific diagnosis? Are labels helpful or harmful?
Payne: Everyone is more than just their disease, so no one should ever be defined by a diagnosis, a label.
But labels are helpful to us, the psychiatrist and patient. If someone has bipolar disorder, I can say to that patient we are going to approach treatment differently than if it was a major depression.
However, one of the problems is that labels also make their way into the common vernacular, and unfortunately popular culture doesn’t distinguish between some of the annoyances and the trials that all of us experience every day versus a mental illness.
How many times have you heard someone say they went “all OCD,” or they are depressed about an exam or have anxiety about a bad day at work? These are situations, not illnesses. Sometimes using terms this way diminishes the reality, the real struggles and the loss of function that people endure with mental illnesses.
How should people with mental illness describe their condition to others? Is it better to say, I’m bipolar, for example? Or is it better to say nothing at all?
Payne: This is totally a personal choice, but I firmly believe that until everyone is as honest and straightforward about psychiatric illnesses as they are about cardiovascular disease, stigma will still exist.
I would never try to force anyone to talk about their illness, but psychiatric illnesses are very real and patients are fighting to live well just like patients with any other medical condition. It’s important to hear their stories.
It would be important to be selective as to whom you tell, wouldn’t it?
Payne: Of course. No one runs up to a group of strangers and says I have diabetes. The same would hold true for those with depression or bipolar disorder. We all need support.
People totally accept when someone says “I have diabetes, and even though I really want that piece of cake, I can’t have it right now.”
For a person with depression to be able to say, “I have depression, but I am getting treatment that is working and I feel great,” could go a long way in reducing stigma and reducing shame.
What’s the most important thing people should know about mental illness?
Payne: Mental illnesses are serious and can cause people to die. These are illnesses of the brain and they are treatable, just like any other illness. They should not be dismissed as being made up.
They should not be viewed as a flaw in character. Mental illness is not someone’s fault.
Where are we now in treating mental illness? Where are we going to be in 20 years?
Payne: Psychiatry is part an art, part a science.
The science is growing and we’ve learned a lot, but one aspect of being a good psychiatrist is gut instinct and recognizing patterns. We know that certain medications work well for certain groups of people, but whether those medications will work in a specific individual is a kind of experiment.
In 20 years, I hope for more individualized treatment.
Right now what we call depression is probably a bunch of different illnesses. We don’t know all the broken parts. I want us to get to the point where we can say you have depression of this particular type and this is how we are going to treat it based on your biology. That’s where we need to be.
We need to be able to fix all of the broken parts.