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

by Patrick J. Kennedy

  It is not so unusual anymore to hear this kind of testimony in Congress. But to hear this from senators, late in the evening on the floor of the Senate in 1996, was a revelation.

  Almost equally shocking was that after the senators spoke so movingly, my father got up and moved that their amendment be tabled.

  He said he was completely in agreement with them in theory, but he thought the amendment would undermine the chances for his main piece of legislation to get through Congress and be signed into law. But Domenici and Wellstone refused to withdraw the amendment, so the motion to table mental health parity was put to a dramatic vote. My father and Senator Kassebaum, along with Chris Dodd, Tom Daschle, Bill Frist, Harry Reid, John McCain, and others, voted to have the parity amendment tabled.

  They were soundly defeated, 65 to 33.

  The motion was, at least temporarily, attached to the bill. But the amendment ended up being taken out of the HIPAA legislation at the very last minute, on August 1.

  The very next day, Domenici and Wellstone reintroduced it as a stand-alone bill, the Mental Health Parity Act of 1996—which was the official beginning of using the phrase “mental health parity” for the movement to end medical discrimination against brain disorders. They proposed this new “parity” be accomplished through changes to the federal Employee Retirement Income Security Act (ERISA), which defined the rules of many retirement and healthcare plans and, because it was under the Department of Labor and not the Department of Health and Human Services, would more quickly and broadly be effective. (Since healthcare is largely dispensed at the state level, state health laws can be different than federal laws, yet many federal labor healthcare protections cross state boundaries.)

  When President Clinton signed the HIPAA bill on August 21, he made it a point to express his “disappointment that the Congress dropped from this legislation the mental health parity provision that received such bipartisan support in the Senate,” adding, “Individuals with mental illness have long suffered from discrimination in health plans that impose severe financial burdens on top of the illnesses they already face. I urge the Congress to act at the earliest opportunity to require parity in health insurance coverage for mental health services.”

  At that point, one of my colleagues in the House—longtime California Democratic Congressman Pete Stark—made a last-minute attempt to beef up the mental health parity protections, introducing a bill closer to what Paul Wellstone had originally wanted. It would have amended the Internal Revenue Code to force all group health plans to have full parity—covering all DSM diagnoses—and, more important, would have restructured the Medicare health benefit for full parity. (Because Medicare is the largest single health insurer in the nation, a change in the Medicare health benefit is followed by all insurers.) But the House instead followed the lead of Republican Marge Roukema from New Jersey—the longest-serving woman in the House and one of the first representatives openly interested in mental health issues (in part because her husband was a psychiatrist). Her bill was pretty close to the Senate bill, and that’s where we ended up.

  A month later, the parity bill was attached to a veterans appropriation bill and was quickly signed into law. The final version was pretty watered down. It only included “serious mental illnesses,” it didn’t include substance use disorders at all, and the final version even allowed employers to shift the new costs to employees by raising their overall copayments and deductibles.

  “We didn’t even get half a loaf, we just got crumbs,” Paul Wellstone later told a colleague. “But,” he said, “it’s a start.”

  The era of mental health parity as a political struggle—a way of trying to end medical discrimination through legislation, just like the civil rights movement—had officially begun.

  —

  THIS ORIGINAL mental health parity act was limited, largely because of fear of skyrocketing costs and lack of political will. But the truth was, the mental health community itself was deeply divided, and the public’s perception of mental healthcare as scientific and evidence based was under attack.

  Prozac and the antidepressants that came after it became wonder drugs for some patients and for almost all pharmaceutical companies. The drugs also became a convenient target for those who didn’t “believe” in mental healthcare or mental illness—or had been victims of substandard or outdated care when they needed help the most—and who focused their attacks on some of the understated side effects of the new medications (as if all drugs, new and old, weren’t supposed to have side effects) and the huge profits the drug companies were making, especially with “me-too” drugs. Ironically, they focused much of their attention on one particular phenomenon—a slight uptick in suicidal ideation and suicide attempts in the first weeks after some patients began responding to antidepressants. There is always some risk of suicide at every stage of a mood disorder—even the moment when symptoms improve slightly with treatment. But the antipsychiatry forces, who believed that the illnesses were caused by the medications, used this small uptick to attack biologically based mental healthcare itself.

  Some of these antipsychiatry attacks were encouraged by psychologists, social workers, counselors, and others who treated patients only with various “talk therapies” and distrusted the growing psychiatric drug culture. But the world of psychotherapy was also being rocked by a huge controversy about so-called false memories of abuse that parents claimed their teenage and grown children’s therapists were “implanting” during treatment. This “false memory” controversy was an attack on certain techniques used in certain forms of intensive psychotherapy—mostly clinical hypnosis. But it was also an attack on what was coming to be called “trauma-based therapy,” and the challenge of figuring out how to treat a newly appreciated range of post-traumatic stress disorders. Most people agreed that the trauma of war, or the trauma of sexual or other physical abuse, could trigger mental illness, and throughout the history of mental healthcare, practitioners and patients were taught that memories can be powerful and debilitating without being completely accurate. So it was shocking when parents began suing therapists claiming they were deliberately destroying families by blindly overbelieving patients.

  This was also the period when electroconvulsive therapy (ECT) was beginning to make a comeback. Unlike in the harsh early days of the technique—which was used before there were any practical medications for mental illness, and before much was known about the seizures it triggered—ECT was now done at much, much lower doses, and with full anesthesia to minimize the negative effects of the treatment and maximize its unique antidepressant effect. But it still scared some people (mostly people who didn’t need it).

  These controversies, while overblown by the media, did serve to reinforce to some people the notion that mental healthcare wasn’t yet ready for parity. But that was, of course, part of the discrimination. There were similarly bitter controversies in many areas of medical care, from cholesterol and cardiovascular disease to cancer, about treatments that were overused or overpriced. But only when it came to mental health was the public given the impression that it was okay to question the care itself, and even to wonder just how “medical” the diseases really were.

  Chapter 12

  As all this was happening, my own mental health was getting worse. But I was getting really good at hiding it.

  Because I did not have a strong opponent coming into the 1996 election, I decided to spend time on the road to help the Democratic Party win back the House, campaigning and raising money for thirty-five different candidates across the country. My thinking was that if I one day wanted to be involved in making policy on national issues—or even if I just wanted more political capital to protect my district and my state—the best thing I could do while this young and inexperienced was to use the fact that people wanted to hear a Kennedy speak about rebuilding the Democratic majority in the Congress. This would also help my House mentor, Dick Gephardt, who of co
urse wanted to be Majority Leader again but also was thinking about the White House.

  I worked incredibly hard for the party all over the country, hoping my local constituents would understand that this would ultimately help them as well. (Some in the local press understood better than others.) But the traveling drained me, isolated me, and made me more depressed and anxious than usual.

  And constantly staying in hotels made for too many empty nights alone with too many temptations. I drank too much, and honestly, I was not a faithful boyfriend. Hypersexuality can be a symptom of bipolar disorder, seeking the release of sexual compulsions can be its own addictive behavior, and the role that sex plays in mental illness and addiction is something that we still don’t talk enough about or research enough. Sexual dysfunction and overdrive can hinder the process of connecting to other people and increase shame, both of which can get in the way of treatment and recovery. And being unfaithful is also cruel. I’m not going to use my illness as my sole explanation for my behavior—I was also too immature and insecure to be in a committed relationship and didn’t even know what one looked like. But I am solely responsible for the infidelities that blew up that relationship.

  When I admitted to Kate what I had done and begged for her forgiveness, she decided we should spend some time apart. When that time apart extended from the start of summer into when she was about to start law school in the fall and I hadn’t convinced her—or myself—that I was ready to marry and settle down, she said we should start seeing other people. I was devastated.

  This had really been my first long-term, pretty serious relationship, and I hadn’t realized just how important she was to me and to my basic daily stability in Washington—until she was gone.

  I started falling apart. As part of my attempt to not fall apart—and to try to document and break certain patterns of behavior—I decided to start keeping a diary. So I have a pretty good record of how I unraveled.

  My staff recognized a change in me. I was clearly more depressed, or more something, because I had never said out loud to any of them that I suffered from depression. They knew I had a therapist, because they had to block out times for me to see him. But they didn’t really understand the depths of my illness and what exactly I was being treated for. At the time I honestly didn’t realize how they saw me. I thought I was doing a pretty good job of appearing pretty normal. In fact, my swinging moods and occasional morning hangovers became predictable enough that my schedule was built around those cycles. And the smart lobbyists—especially those in mental health and addiction, some of whom were in recovery themselves and understood what was going on better than I did—just called ahead before any meeting to see if I was okay and offered the staff the option of rescheduling so there was minimal friction.

  Since I’ve been fully committed to recovery over the past few years, I’ve recently had the chance to talk to my former staff about what they thought was going on back then. One said he assumed I was going to therapy to “be on the couch” discussing “stuff” about “your dad.” This was based on the assumption that psychotherapy was something I decided to do for self-improvement, not something I needed in order to treat a medical condition.

  What is amazing as I look back at this time is how functional I was able to remain. One thing people who don’t suffer from mental illness often don’t understand about these diseases is how long—how many days, weeks, months—people can suffer from symptoms that are extremely painful and debilitating but just bearable enough to stay ahead of.

  When people have depressive or manic or psychotic breakdowns, or make suicide attempts, the people around them are often surprised they “didn’t see it coming.” But that’s because it is rare for the person with mental illness to be open and honest in real time about what is happening, what is “coming.” It is hard sometimes to admit to ourselves how often these illnesses are encroaching on our lives before we reach the point of emergency.

  It is hard to admit how abnormal our normal can be.

  Like many people who suffer from mood disorders, I was elevating the dramas of my life all out of proportion. I became fixated on my breakup with my girlfriend, mentally yanking myself back and forth about whether or not I was ready for marriage and whether I had destroyed my only chance at happiness.

  I talked about this with my dad, but that only made it worse. He didn’t seem to get upset enough about what I was upset by, and this infuriated me. But sometimes, I had to admit to myself that the real problem I had with him were the questions I wasn’t brave enough to ask. I had just blown a relationship because I had cheated—and took that cheating to mean that this probably wasn’t the right relationship for me, or the right time to be in it. So what I really wanted to know was how these issues had played out in his life.

  Of course, who ever asks their dad about that? Even if their dad has been asked the same question dozens of times by the press.

  As I had since I was a teenager, I started writing my father letters that I was never going to send, as therapy. One day I wrote, “Dear Dad, with all you’ve been through I wish you could talk to me, really talk to me, about what advice you have for me to have a fuller, more intimate and meaningful life. How to cope with life’s challenges and really talk . . . I guess I need to live and love more women and can never get away from the challenge of dealing with my internal boogey man and quell the unsettling desires.”

  Only weeks after I wrote this, my cousin John Kennedy Jr. got married, in a very private ceremony. Almost immediately, the press decided that, although the country was in the middle of a presidential election, it was important to do some stories speculating on who would be the family’s most eligible bachelor—or, as the New York Post asked, who would “inherit John-John’s hunky mantle.” Everyone from the Post to the Nashville Tennessean to, even, Roll Call, our Capitol Hill insiders’ paper, nominated me. They did this even though the Tennessean said I was “the family geek” and Roll Call ran a cartoon about a “Kennedy Closeout Sale” and said I was the “only one left” and “ready to be your mystery date.”

  I joked about this to the press—it was funny, and what else was I going to do? But it couldn’t have come at a more painful time.

  Two weeks later, I wrote, “I have been on automatic pilot for the last ten days or so and I’ve wanted to lose track of myself but it hasn’t been possible. I feel as though I am holding my breath emotionally and have yet to exhale after my breakup with Kate. . . . I feel like I’m losing it. . . . [I’m so] loosely wrapped . . . that anything, people or events, can pull my strings and I could unravel. I feel my self-esteem shrinking in the face of unhappy news or difficult times . . . I missed my plane and . . . the panic over it was enough to send me into tears.”

  Still, I managed to function. The President was reelected in November, and while we didn’t get back control of the House or Senate, we made some progress in both. And it was pretty clear that Newt Gingrich would not remain as Speaker too much longer.

  —

  MY FIRST SERIOUS INVOLVEMENT in national healthcare issues in Congress grew out of a situation that was very local: an ailing nonprofit hospital system in Providence, the Roger Williams Medical Center, was being eyed for purchase by Nashville-based Columbia/HCA—the new giant in the growing and feared field of for-profit hospitals. We worried that meant there would be no guarantees the hospital would continue to offer the kind of free care for the indigent that Providence required. We were against for-profit hospitals in theory, a struggle that now seems very out-of-date, since we now realize there can be good and bad nonprofit and for-profit hospitals. However, this particular chain had a number of specific allegations against it already, and in retrospect, it still seems like it was worth challenging them.

  Because this proposed takeover wasn’t a national issue, I didn’t have to worry about the Republican majority in the House. Instead, we brought national Democratic attention to the issues, even bringin
g Congressman Pete Stark from California in to speak against it.

  The only real downside for me, politically, was that the sale was supported by Rhode Island’s senior US Senator, John Chafee, a moderate Republican. I had a good relationship with the Senator even though many thought I should run against him as soon as I reached the minimum age of thirty.

  I may have been the only Democrat in New England who didn’t think I should run for Chafee’s Senate seat. I realized early on that the nature of my illness could prevent me from taking that next step, where there was more pressure, and more danger of getting sicker and being exposed.

  Working with colleagues in Congress and former colleagues in the State House, we were able to help craft a bill that would make it so restrictive for a for-profit hospital company to come into Rhode Island and buy a non-profit hospital that it wouldn’t be worth it. The governor vetoed the bill, but we had enough support to override the veto.

  Not long after, federal authorities announced they had been investigating Columbia/HCA for defrauding state and federal healthcare programs, and a whistleblower who had reported the company had been sent back in to gather more evidence. Eventually there were resignations, plea agreements, and a large fine.

  —

  THIS WAS ONE of the first in what became a series of healthcare–related investigations by the regional offices of the US Attorney, and state Attorneys General—many of which were seen as taking the place of the federal regulations and oversight that had been undermined by the Republicans in Congress. These investigations looked at corrupt practices in hospital care, and individual physicians overcharging or phantom-billing for services.