My lecture had just ended when a carefully dressed woman asked me if I had a moment. I could see the distress and exhaustion in her eyes. Her name was Ellen, she said, and her 18-year-old son had become a constant source of worry and fear for the family--that he might do something terrible to himself, or might in one of his angry outbursts attack his sister, grandmother, father, or even Ellen herself. Tony had always been shy and awkward, she explained, but he had never had any behavior problems at school. When Tony turned 17, Ellen said, "...he began to change before my eyes. He became so hard to talk to, always wanting to be by himself, avoiding us and his friends. The school called to say he'd been absent a lot, and when he was there, he wasn't paying attention. I told him I was worried about him and thought he needed to see a doctor, and he said, 'I'm fine. Just leave me alone.' The family doctor said to give him time, but he's only getting worse."
Tony's mom was teeming with urgent questions: What should I do? How much time should I wait? What is the matter with him? Is he safe? Will he ever get well? And then there were the questions I thought she probably wouldn't even know to ask: what types of treatment exist, how to find them, and how to pay for them. How will she know that the treatment is right and working? And perhaps most important, what can she do to help him get the help he needs? All too frequently, people with a serious mental illness, like Tony, insist that they are fine and resist help, frustrating those closest to them. Not only does not getting treatment cause needless suffering, it can be associated with behaviors that are dangerous to the person himself, or to others.
I recall the wife of an attorney whose husband had become severely depressed after some business setbacks mid-career; the older, adult sister of a teenager whose weight had dropped from 120 to 90 pounds and who was constantly exercising and saying she was too fat; the spouse of an Army Reserve soldier back from his second tour in Iraq and drinking heavily, unable to sleep, plagued by nightmares and saying his family would be better off without him. Like Tony, the loved ones of these family members wanted no help. Their illnesses left them convinced that nothing was wrong, or feeling ashamed or hopeless, or all of the above.
More than 50 million Americans, youth and adults, are diagnosed each year with a mental illness like major depression, panic disorder, generalized anxiety disorder, PTSD, OCD, eating disorders, bipolar disorder, schizophrenia -- and alcohol and drug abuse, which frequently co-occurs with serious mental disorders. Their parents, spouses, siblings all worry about what to do to help them and what will happen next. While the most alarming instances of violence are truly rare -- usually the product of untreated mental illness and active drug and alcohol abuse -- they dominate our news. These are tragic illustrations of how not intervening early and effectively for problems that had broadcast themselves for quite some time can escalate into events that scar our national consciousness.
I have talked with thousands of family members like Ellen in my 35 years as a psychiatrist. Their pain and confusion is indelible in my mind. For them, and the millions of others who have a loved one with a mental illness, I can report good and bad news.
The good news is that improvement rates for serious mental illness like major depression and bipolar illness are as good as or better than those for chronic physical diseases like diabetes and heart disease -- provided the patient receives the right treatment consistently. The bad news is that an astonishing 80 percent of people in the U.S. -- tens of millions of people -- with treatable mental disorders do not receive proper diagnosis and effective treatment. One of the biggest challenges families face is often not the disease itself but the fight their family member will put up against getting any help.
Mothers like Ellen want and need to understand what has happened to their once happy child. Like other parents, spouses and siblings of anyone who suffers with depression, or an eating disorder, or PTSD -- mental conditions that are more common than any of us want to believe -- they are each trying to understand and help their loved one through the pain and dangers of their illness, and relieve the entire family of the burden these diseases create.
Every family (and friends and co-workers) with a member who has a mental illness encounters the same formidable problems. These families ask the same critical question, "What should I do"? I usually begin by saying four things:
Don't go it alone. Mental health problems, including addictions, are among the most common medical problems that exist! This means that many others, in your family and among your friends, have been down the same road you are on. Who can you confide in, trust, and ask to join you in thinking through the problems you face and the solutions you will need to find? Turn to your family doctor and trust your judgment; if necessary, don't accept a 'give it time' response.
If you know someone who has had a depression, addiction, traumatic disorder or other mental illness and is open about it (and, thankfully, more people are) ask for guidance; you may hear the good, the bad and the ugly but the more you learn the better. Turn to advocacy organizations like a local chapter of the National Alliance on Mental Illness (NAMI) or the Mental Health Association (MHA); they have help lines and may also provide referral information. Whatever you do, don't go it alone. You owe that to yourself and to your loved one. That lesson has been learned with every serious illness, including diabetes, heart disease, cancer, arthritic conditions, Alzheimer's and countless other conditions. Mental disorders are no different.
Don't get into fights with your loved one. This may be the hardest prescription of all. Faced with clear evidence of problems, your reason defied, and your worry and love driving you, you want to push harder, insist on your loved one facing the facts, doing something! That is the moment you need to take a deep breath and figure out how to control yourself.
Getting into a fight does not work. In fact, sometimes fighting will drive them more into their shell of denial and defeat. You need to ask yourself what is my loved one thinking or feeling and if you can't understand then how can I find out? You want to try to understand how their behavior may be serving them, in a way you don't yet comprehend. You also want to consider what leverage you have; for example, in addition to your love and concern, which is not quite working, what supports are you providing (like a cell phone, money, car, even a place to stay) that can be used to negotiate for what needs to be done.
In another Huffington Post article I introduced the concept of 'motivational enhancement', a process that helps a person see why they do what they do, why they might bother to change, and how to go about it. This is but one example of how to avoid a fight, and there are other techniques you can learn. Avoiding a fight is not the same thing as being disengaged; in fact, it is staying just as involved -- in a different way. But don't get into a fight. The battle is usually lost if you do.
Learn how to bend the mental health system to your needs. Mental health care in the U.S. is broken, as you have or soon will see. You will need to learn how to piece together its parts and make it work for your family. Because you are not alone there are others who can guide and coach you -- you can find them among other countless other affected families and in advocacy organizations. Like it or not, you will need to become a vocal spokesperson for what your loved one needs in a system that is fragmented, not organized to be accountable, not funded to incentivize effective care, and very uneven in its quality, despite good people trying to do the right thing. It may not be fair, or right, but health care in general -- not just the mental health system -- now demands informed and self-directed consumers and families.
Settle in for the siege and never give up. Few disorders, mental or physical, come and go in a short period of time. Most persist -- think of hypertension, heart disease, diabetes. The path of recovery is usually not immediate or continuous. The illness may go untreated, the treatment response may not be quick enough, services can be difficult to access and the quality of care may not be good enough. And through it all, your loved one may continue to resist getting help.
Your morale and determination will be tested. Never give up. My profession has learned again and again that at a certain point, often difficult to predict, a person's engagement in care and the course of illness shifts -- and a life is restored. When your loved one (and you) learns how best to manage their illness, and their overall wellness, then life will get back on track. I have seen so many people with serious mental disorders have full and gratifying lives. They may not be obvious in everyday life because fear of stigma has them quiet about their conditions; but I assure you they stand as terrific examples of people who have learned to live with their illness, and get the support they need to do so.
For all the Ellens, families and friends reading this post, start with these four guideposts. In future posts, I will discuss in more detail how to manage the mental health system and how to work with your loved one so they seek or continue to get the care they need.
The opinions expressed herein are solely my own as a psychiatrist and public health advocate.
Dr. Sederer receives no support from any pharmaceutical or device company.
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