A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction

by Patrick J. Kennedy

  “I can’t resign,” he said. “I need to finish my treatment, and I won’t get any care if I resign. All these years I never needed healthcare. Now when I need it, how am I going to get it?” This was also making him wonder how his constituents got mental healthcare. I told him that was a good sign—if he was still thinking about other people, he would be all right.

  We took some pictures, we hugged, and then I left.

  As I walked down the hall to the exit, I thought about all of the “aha” moments there are in the world of these diseases. So many people hiding and pretending, so many people who just want to be able to say out loud what’s wrong with them and get proper treatment, so many people all over the country who are facing the same problem but rarely find each other—and if they do, it’s often too late.

  We need to better engage those who think these illnesses don’t affect them, to help them move from prejudice—which they often don’t realize they have—to at least an enlightened curiosity.

  Several hours later, I fulfilled my role as Jesse’s messenger, speaking to NBC News about my meeting with him. “No one wants to admit that they suffer from a mental illness, because of the stigma,” I said. “Both of us suffer from major depression. He knows that I’ve been through a lot of the same things that he’s going through now.”

  I made it clear that while Jesse was ill and I was, at the moment, doing pretty well, I knew there would likely come a day when our roles were reversed, and he would have to be there for me. These are chronic illnesses. So far, we have no cures. Only medical treatments, meetings, research, spirituality, hope, and belief in a common struggle.

  —

  I LEFT CONGRESS at the end of 2010 to change and, hopefully, to save my life. Since then, I have been crisscrossing the country on a sort of Lewis and Clark expedition into the new frontiers of medicine, politics, economics, and human emotion in mental healthcare and brain research.

  I speak to groups who want to hear about my personal challenges and my political challenges, and about the future of healthcare—especially healthcare from the neck up. I meet with top scientists in their labs and see the cutting edge of research. I hold public hearings for patients and families denied their mental health benefits. And I’m constantly pulled aside for private and incredibly revealing conversations with an amazingly broad cross-section of people.

  They often just need someone to talk to about their own challenging experiences with brain diseases, someone who “gets it.” But they also appreciate having that conversation with someone who is deeply involved in the worlds of mental health policy, medicine, science, law, and economics—so when they ask what they can do to help, or what the future looks like, they can get a useful answer. Or at least an informed opinion on what isn’t yet known.

  For the past twenty years, including my time in the House, I have been immersed in the big science and big business of mental health, as well as the small steps of progress in many people’s care. I interact with everyone from heads of state and international business leaders who privately suffer with mental illness to the local family we know, whose mentally ill son was shot to death by an untrained police officer.

  I also get deeply involved in the politics of the brain, which are fascinating and inspiring but also sometimes bruising. The fight to save “beautiful minds” can get pretty ugly.

  I’ve had a chance to see these frictions from a unique perspective. While sitting on a House committee being asked to fund all these competing approaches and perspectives, I was also suffering from, and not always taking very good care of, the mental illnesses of bipolar and anxiety disorders, and the substance use disorders of binge drinking and opiate abuse. I have watched debates by top scientists, policy analysts, treatment professionals, drug manufacturers, and insurers and then, just weeks later, sat in group therapy commiserating with fellow inpatients about the same problems from a wholly different vantage point.

  It takes a while to understand and navigate these worlds as a patient or family member. And a shocking number of people walk away from treatment that works after reading something inflammatory about the politics and economics of care—or they game the failures of integration in the system, hide between the cracks, and make themselves sicker. I have, in my “career” as a patient, seen and done both. But, working in the politics of medicine, I also understand that everyone in the world of brain diseases has attitudes formed in an environment of discrimination and prejudice.

  Most of the varied approaches to care began getting traction before there were actually any medicines that worked. And the business of those medicines now often competes with the business of behavioral therapies and supports, as well as the housing and employment assistance usually required to keep people in any kind of treatment and healthy lifestyle. Each sector treating mental illness or addiction is challenged, underfunded, and discriminated against in its own way. But it’s still hard to watch people who care deeply about brain diseases and have devoted their lives to their treatment competing on medical, legal, or financial issues—as if certain diagnoses or therapeutic approaches are supposed to win.

  It is sometimes hard to remind all these people—who, by the way, work incredibly hard in their own worlds—that they are all treating the same organ, the brain. And, just like for every other organ, we need to support, research, and reimburse a menu of evidence-based approaches. We need to build bridges between all the disparate researchers and clinicians in neurology, psychiatry, psychology, developmental disabilities, and cognitive impairments—as well as the people they treat and their families. We need to help inspire an increasingly “one-minded” approach to not only mental illness and addiction but brain diseases from autism to Alzheimer’s, bipolar disorder to traumatic brain injury, seizures to PTSD.

  We need to constantly remind people that this is a common struggle.

  —

  PEOPLE HAVE BEEN LAMENTING the stigma of mental illness and addiction for centuries. So why do I think anything is going to change now?

  Simple. Until very recently it was completely legal to discriminate in treatment and insurance coverage against those with mental illness and addictions. We have referred to this phenomenon as “stigma,” as if there were some justification and shared responsibility for the questioning and blaming and undermining of those with certain types of illnesses, describing their traumas and challenges as “little fendah bendahs.”

  But it’s time to stop asking to be destigmatized and instead start demanding an end to discrimination.

  Because what many still don’t realize is that this discrimination is now a federal crime.

  Mental health parity is finally the law of the land. Based on the guarantees of the Mental Health Parity and Addiction Equity Act—which my father and I helped pass together in 2008 but has only recently started being implemented—and the Obama Patient Protection and Affordable Care Act, it is finally illegal to cover mental illness, addiction, and intellectual disabilities any differently than other medical conditions, and preexisting conditions can never again be used to restrict access to coverage. While these laws were signed several years ago, because of court challenges and the seemingly endless process of government rule-making, they couldn’t begin to be fully enforced until July 1, 2014. And they are still barely being enforced today.

  The Mental Health Parity Act is the equivalent of a medical civil rights act, a brain disease equal rights amendment—the legal end of the discrimination that is at the heart of the stigma of brain diseases. As a politician, as a patient, and as a member of a family haunted by mental illness and addiction, I have waited my entire life for this moment.

  But I also know that since we weren’t sure this moment would ever come, we are largely unprepared for it. We’re still struggling to figure out how the promise of mental health parity will be put into practice.

  Fifty years ago, when “civil rights” became the law of the la
nd, nobody was really sure how to outlaw racial discrimination. It was up to people like my Uncle Bobby, as Attorney General and later as a Senator, along with many others to figure out how to operationalize and enforce such a societal change. And we will have to figure out how to do the same for this “parity” by outlawing medical discrimination, stigma, and inadequate care.

  It is a daunting, exciting challenge. We have all lived our entire lives, as did our parents, our doctors, and our leaders, making decisions about mental illness and addiction under the assumption there would always be prejudice, there would always be institutionalized, legal stigma and discrimination. We have to start adjusting to the unfolding realities of a post-parity world, and help change that world.

  We must do it now, together, and in the open.

  —

  OUR SECRETS ARE our most formidable adversaries. The older I get, the more I see secrecy as “the enemy within,” which blocks recovery not only for individuals but for society itself.

  That phrase has a special meaning to me. Not long before he died, my father gave me his copy of his brother Bobby’s 1960 book about union corruption, The Enemy Within.

  It is autographed: “To Teddy, who has his own enemy within.”

  Giving me that book was the closest my father ever came to acknowledging anything to me about his own struggles. Which is probably why I have been so invested in exposing the secrecy around mental illness.

  Since I first “came out” about my treatment for bipolar disorder and addiction, I have found myself talking incredibly frankly to an enormous number of people who feel it isn’t safe to share the secrets of their illnesses. I’ve had these intimate and moving conversations with an astonishing number of people, from the powerful to those who feel utterly powerless, in all kinds of settings.

  Sometimes the conversations become a huge step in their ability to acknowledge the common struggle. Other times they reinforce the hypocrisy and pain of our stigmatizing society.

  You would not believe how many times a Congressman or other public official has pulled me aside for advice and counsel because they, or a loved one, suffer from a mood disorder or an addiction, and they need a recommendation for treatment.

  And I still have a hard time believing how many of these same public officials have failed to support funding for mental illness or addiction research, and even voted against parity for their treatment.

  Recently, I have found myself being more open in my advocacy, perhaps because the national tragedies involving mental illness have made the cost of remaining quiet more clear. I have also been reaching out to the doctors who treated me over the years, to discuss my own care and the state of mental healthcare. These conversations have been fascinating, especially now that I have the perspective of today’s science and my own personal perspective from the longest period of continuous sobriety I’ve experienced since the age of thirteen.

  That sobriety has not been very long, and I don’t kid myself that it will ever get any easier to maintain. I began counting it several months after my last days in Congress, on February 22, 2011—what would have been my father’s seventy-ninth birthday.

  And the main reason I am able to stay sober is because of a stroke of luck and coincidence that I am more than happy to attribute to divine intervention: the spring before I left Congress, I met and fell in love with my wife, Amy, a middle-school teacher in coastal South Jersey, where I now live. Amy has saved my life in so many ways but, more important, has provided the love and support I needed to commit to the daily work—and joy—of saving my own life.

  Amy and our young children are what keep me on my spiritual journey of recovery and hope. In fact, they are probably the only reason I am still alive. They remind me every day of our most underappreciated treatments for these illnesses: love and faith.

  They also remind me of the biggest reason to fight for mental health parity. My own children are at considerable genetic risk, just as I was, of developing mental illness and addiction. Which means that they can, and must, be part of the first generation in American history to have their brain diseases treated like every other disease.

  Our children must be part of the first generation for which routine doctor visits include a “checkup from the neck up.”

  When you have heart disease or cancer, nobody questions your diagnosis—even if it changes or your treatment changes direction. And nobody uses setbacks in treatment as an excuse to question whether or not cancer or heart disease really exist, or if they are all “in your head.”

  My goal is to change the way we talk about mental illness and addiction in this country, move the conversation from a painful existential debate to a more useful and forward-looking discussion about proper diagnosis and care. The sad truth is that while we still have so much to learn about the brain, most patients don’t even benefit from what we already know. More than half the people who have been diagnosed with any mental illness do not get treatment at all. It is time for this to change.

  My hope is that by writing about and exposing the worlds I get to visit—as a politician, advocate, patient, and family member—I might be able to make your journey less isolated. These struggles are much more common than most people realize, but too many of us still face them alone, if we face them at all. That isn’t necessary, it isn’t healthy, and it isn’t how any of us want to live our lives.

  I believe more than ever that we have the power to help change the world for people who have mental illnesses and addictions, and for all of those whose lives are touched by these brain diseases—which is to say, all of us.

  In fact, I have bet my life on it.

  Chapter 1

  During the winter of my sophomore year at Providence College, in early 1988, my back started hurting. First it was just occasional pain, then spasms would wake me in the middle of the night, and then I noticed I was stubbing my toe all the time, because I wasn’t lifting my leg normally when I walked. I went to several doctors, who told me they couldn’t find anything wrong. One night I decided to drive to the hospital but had to put the seat way down to even get into the car. At the ER, they weren’t sure whether or not to give me painkillers, since they thought I might be faking to get drugs.

  After all, I was not considered the most reliable patient at that time. I had already been in rehab for cocaine, after a binge during spring break of my senior year in prep school. Then I had bailed out of my first semester at Georgetown, before ending up at Providence.

  I had suffered with severe asthma since childhood, which was considered as much a pain in the neck as a disease. My asthma was set off by a lot of things—animal hair, smoke—and besides my inhalers, I sometimes needed oxygen. Yet “He’s asthmatic” had, over the years, taken on meanings far beyond my breathing problems. And while I clearly suffered from depression and anxiety, they were not really viewed medically—they were seen, mostly, as symptoms of my parents’ divorce.

  Because I was living away from home—my mom was in Boston, my dad in DC—the ER staff decided to call my local doctor to see if it was okay to give me medication. That was my psychiatrist, a young guy named Peter Kramer, who five years later would become famous for writing Listening to Prozac, but at the time was just a rising psychotherapist who actually used medication pretty sparingly, if at all, the way it was supposed to be used: to help treat symptoms and enhance talk therapy, not to replace it.

  Peter vouched for me—he considered it part of my work with him that he and I figure this out without calling my father. And they sent me home with the pain meds. But I had to agree to see him the next morning and then also get an evaluation from an internist he knew.

  Of course, the painkillers knocked me out so much I slept through the appointment. So Peter decided to devote the therapeutic hour of my missed session to driving down the street to my apartment and banging on my front door until I woke up and he could make sure I got to the doctor’s appo
intment. The internist took me a little more seriously than the ER docs had and did a full-body scan.

  And that’s when they found it. There was a tumor on the vertebrae of my neck. A pretty big one, actually, nearly an inch around. While it was likely benign, it was wrapped around a nerve root in a way that made removing it—or not removing it—very risky for possible paralysis.

  When I got this news I was, in some strange way, thrilled. While I now find this hard to believe, I remember that, at the time, I actually welcomed this diagnosis. Because, for the first time in my life, there was something wrong with me that everyone agreed was “real.” For the first time in my life, people acted like they had a legitimate reason to worry about me and what I was going through. No more of that “Oh, poor Patrick”—but, instead, a solid “Oh my god.”

  If you are lucky, you have no idea what it’s like to have a disease that society questions because people can’t “see” it and aren’t sure they “believe in” it. I have a couple of those illnesses, which are easy to deny or downplay. While people always tried to be sympathetic—I was, after all, a scrawny, good-natured, redheaded kid who sometimes couldn’t breathe—I also felt dismissed as weak, as if I could control these illnesses but simply chose not to.

  But, suddenly, a tumor on my spinal cord! Top surgeons at Mass General going through all the X-rays and pointing to the tumor and talking about how complicated the surgery would be and even if it wasn’t malignant I could end up being paralyzed. The tumor was growing and tangled around my spinal cord and all this great medical stuff that sounded terrifying to everybody else but actually gave me this strange kind of peace. There was something wrong, there was something they could do, but, more important, I had something that I wasn’t ashamed of.

  I recall actually saying to my twenty-year-old self: “Thank god I have cancer.”