A Kennedy's Struggle With Depression, Addiction and His Family's History

Patrick Kennedy has opted for a life that includes a new family and a civilian mission as a mental health advocate after 16 years in Congress.

By Laurie Sue Brockway, Everyday Health Staff Writer

Patrick Kennedy, the youngest son of the late Sen. Edward Kennedy and Joan Kennedy, has become a new hero in the world of mental health advocacy. As a proponent of brain research and a spokesperson on the dangers of mental health stigma, he is helping to lead a crusade to bring mental illness out of the dark ages.

Kennedy, an eight term congressman who served as the U.S. Representative for Rhode Island from 1995-2011, said it is his own experience with depression, addiction, and bipolar disorder, and his family history, that has inspired his work in this field, yet he is finding himself at the forefront of an important national conversation about parity for mental health conditions in medical care that is much bigger than his own experience. To help with the cause he co-founded the foundation, One Mind, which is focusing on curing diseases of the brain and eliminating stigma.

Kennedy admits to being in and out of psychiatric treatment for “most of my life,” but says his big wake-up call occurred in 2006 when he smashed his car into a barrier near Capitol Hill and was subsequently arrested for DUI. The drugs in his system were Ambien and a nausea medication, but it forced him to face more serious underlying conditions — depression, alcohol addiction, prescription drug use and what was ultimately diagnosed as bipolar disorder. And it led him to speak more openly about his own experience.

“I just felt like I didn’t have a choice at that point because I was already public,” he recalled. “There was no anonymity, if you will, in my struggle. I was well-known for having this disease and people knew it ran in my family.”

Over time, Kennedy’s new role began to evolve naturally as he became more comfortable sharing his story. “What’s happened since that time is I found people in my life that were also struggling like me,” he explained. “People who would self-identify because they knew who I was and where I came from. I became an easy person for other to self-disclose to. That ended up helping my own recovery. It also helped me recognize that this was something that needed a voice and I was in a place where I could provide that voice because it was personal and, within in my own experience. I knew it intimately.”

Having grown up in a family that was very much in the public eye yet struggled for some semblance of privacy, Kennedy had to fight most of his mental health battles in secrecy.

When he was a boy, his older brother Edward fought a very public bout with cancer and lost a leg to the disease. Then there was his parent’s headline-grabbing divorce and his mother’s well-known struggles with alcohol addiction and, later, breast cancer. His sister Kara got lung cancer and seemed for a time to have survived it. His dad was diagnosed with a brain tumor and died in 2009. In 2011, his Kara sadly passed away unexpectedly.

With the enormity of the illness around him in his immediate family, and so much loss and tragedy in the Kennedy clan, mental illness was not talked about. In fact, Kennedy was so concerned about the stigma associated with his illness that when seeing a therapist in Washington, DC, he would park his car four blocks away so no one would know he was in treatment. And when he needed rehab for opiate addiction, he made his physician care for him outside of the psychiatric ward, so that no one would know he was being treated for addiction.

It was through this struggle that he learned firsthand that mental illness is not treated with the same urgency as a physical illness. While in Congress, this awareness led him to sponsor The Mental Health Parity and Addiction Equity Act, which states that mental illness and addition must be treated with the same consideration given to physical illness. It was signed by President Bush in 2008 and still awaits execution from the Obama administration. As a civilian advocate, he continues to try to use his voice to see that bill through, constantly reminding people how much it is needed.

He feels the battles he fights today for mental illness will save his own children and the next generation from fighting it twice –the personal fight and the fight against stigma. In 2011 he married school teacher Amy Petitgout. They are raising her five year old daughter and their 13 month old son, with a new baby due in November.

We spoke to Kennedy about his personal struggle with mental illness and his public advocacy.

Everyday Health: What prompted you to leave your job in Congress after 16 years and start the journey as a civilian advocate for mental health care?

Kennedy: it’s hard to know how you end up where you are. It’s a confluence of various events. Clearly, my dad’s passing was a significant turning point in my life. It led me to question how I lived my life and what kind of life I wanted to live, going forward. I would say that moved me to retire because I was more interested at that point on, “how do I build a personal, private life for myself so that if I were ever to find myself in the situation he did I would also have family and friends that could surround me.” I realized, through his struggle with his own mortality, that at the end of the day that’s all we have: It’s our family and our friends.

You’d been in the ‘family business,’ so to speak, and found it was no longer the right path for you?

In politics I had won every election I had been in, but I realized that wasn’t going to keep me company at the end of my day. It was very fulfilling on one level and exhilarating, but on another level it left me both feeling empty and wanting more. As a champion of mental health all through my time in Congress, it made sense that the intersection between my personal journey and my political journey converged. I recognized that as a private citizen I could remain involved on the issue that meant most to me and which I was also most proud of in terms of my accomplishment in congress: the Mental Health Parity and Addiction Equity Act.

You were sponsor of that bill, which would require insurers to cover mental illness on a par with all illnesses. Can you explain how it would work?

The Mental Health Parity and Addiction Equity Act defines six categories of care: Inpatient InNetwork; OutPatient InNetwork; In Patient Out of Network; Out Patient Out of Network; Pharmacy; and Emergency Services. It says that if diabetes is treated across the whole spectrum by primary, secondary tertiary levels of care then addiction and chronic mental illness needs to be treated the same way. If cancer is treated by primary and secondary care along all those categories by an insurance company, then by law mental illnesses and addictions services need to be reimbursed equally along all levels of care. It sets up analogous metrics so that we can now put the idea of equality of coverage into practice. For example: I have asthma, and all that’s covered. None of it is subject to any denial; I get it routinely and automatically. But I also have the disease of addiction—like I have the chronic illness of asthma—but my chronic alcoholism is not treated same way as chronic asthma along all categories of care.

How do insurance companies currently treat mental illness?

The way we reimburse your mental illness-- if you compared it to diabetes-- we would be waiting until you needed your legs amputated or went blind before we would treat you. To give it another analogous comparison: If you had cancer-- the way we reimburse mental illness and addiction-- we would wait until at stage four cancer you are about to die before we would treat your illness. We don’t have any mechanism to implement equal care. The Mental Health Parity and Addiction Equity Act, which was signed by George W. Bush, says the brain is part of the body and illnesses need to be treated on par-- hence the word parity --with other physical illnesses. If it were a heart attack, you’d respond right away. You’d be referred to appropriate services and treatment. No one would second guess what the protocol for treatment would be. [Currently] If you have first onset of schizophrenia, or psychosis for bi-polar disorder, or acute instances of alcoholism or addiction, these are not treated with the same urgency that their other physical counterparts are treated with.

What has to happen in terms of politics and the study of the brain?

Now, we are waiting for President Obama to release the final rule implementing the Mental Health Parity and Addiction Equity Act. It was passed in 2008 and here we are five years later and the White House still hasn’t issued a final rule deciding how that actually gets implemented. Discussion is very helpful, but at the end of the day, if the discussion takes place but we don’t have strong rules implementing the Mental Health Parity and Addiction Equity Act than talk is cheap. The brain is part of the body and none of us would excuse having cancer or diabetes or cardiovascular disease treated the way mental health is treated today, then why are we so silent when it comes to having the brain illnesses that are so ignored.

Are they brain illnesses ignored because they are “invisible” and because people don’t speak up about them?

It’s because of the historic fear and the ignorance that pervades this whole discussion [of mental health]. We really haven’t had a national dialogue about how the brain is part of the body and the symptoms of brain illness are behavioral. We haven’t made that distinction between what is the moral choice and what is the medical choice. These issues are looked at as character issues, not chemistry or medical issues. Everyone thinks it’s up to you to act normally. For some people, their illness hijacks their brain. When their illness hijacks their brain, they don’t act normally. That is a symptom of a brain illness; it’s not a reflection of their moral character. Our brains are the most important organ in our body. They affect how we feel, how we view the world, and how we perceive ourselves and perceive others. Every family in America has in an interest in better understanding so we can better treat anything that is a brain illness. Not only with medications, but to treat it with environmental and recovery models of care.

Are people afraid to force the issue of care with mentally ill individuals who are not actually asking for our help? 

My brother and sister and I had guardianship of our mother, so I am intimately familiar with this whole issue of loving someone and wanting to take care of them when they are unable to care for themselves. This is a big issue and facing families whose children with autism are aging out of our education system. It’s facing families with parents who have early onset of dementia. It’s facing families who have children with severe addiction and alcoholism. This is an issue everybody should care about. Tragically, our criminal justice system has become the biggest mental health system in the country. Sheriff (Lee) Baca, from LA County Jail, said to me that he ran the largest mental health institution in the country. You can go down the list of major Metropolitan areas and see that because there has been no public health approach to this issue, we have had it become a criminal justice issue as opposed to a public health issue.

You’ve been open about your own experiences with mental illness. What was your wakeup call?

I got arrested. Ironically, I had been in treatment at the Mayo Clinic only five months before I got arrested. The differences between that, and when I went back to Mayo [following the arrest], is that when I went back to Mayo I finally went into the mental health ward. When I went to Mayo the first time, I didn’t go to the mental health ward because I was worried about perception. I worried about what people were to think if they were to know that I was inpatient in a mental health facility. Here I am the sponsor of the Mental Health Parity and Addiction Equity Act, the champ, yet in my own case I too wanted it to be kept a secret because of the stigma. I told the physicians to treat me in the regular hospital for the opiate withdrawal I went through.

So you need needed to detox prescription drug addiction to Oxycodone?

The opiate withdrawal was only part of what I needed to recover. It was the physical aspect of my illness. There are other aspects that needed to be treated in addition to the physical aspects. Those would be the emotional and spiritual elements of recovery and the psychological. I didn’t want to be known for having needed that care and as a result five months after I left, I was arrested. Why? It wasn’t because I was back on opiates. it was because I was taking sleep medication, stomach pain and other kinds of medication which altered my mood. That’s an example of the untreated basic illness that was never treated because of the stigma of getting the treatment.

When were you diagnosed with bipolar disorder?

I’d been seeing psychiatrists for my whole life and had various diagnoses and medications over a period from when I was teenager through all my inpatient visits. Diagnoses are, very unfortunately, difficult to ascertain and it takes a long time before you ultimately get a diagnosis. I’ve been in and out for a long time without that diagnosis. I got it [the diagnosis] at Mayo but a lot of this gets overshadowed by the self-medication through the concurrent addiction problem. The most adamant illness is your addiction. As is the case in most folks with these illnesses there are co-occurring illnesses. Often what happened is that everything gets silo’d. That’s one of the big challenges we have is un-silo this system of treatment so we can take a more realistic and holistic approach to treating the individual and better identify the proper course of treatment that’s going to be most effective for that person.

Is there a particular kind of support that helped you through depression?

I’m a big subscriber to 12 steps recovery; it is evidence-based, even though it’s a non-medical “approach.” I think it is cognitive behavioral therapy, if you will, and it is what is most effective in helping. That kind of day-to-day orientation to recovery-modeled care, recovery way of life, and the 12 step recovery is something I’m a big proponent of. I’m a beneficiary of medications and medical treatment as the more peer support and fellowship from being in recovery with my peers.

You grew up in a fishbowl, in a very public family that sought privacy. Now you’ve come to the forefront to share your story. What motivated you?

First of all, I thought it was the worst thing in the world that I had to read about myself as a failure in recovery when I got arrested. Here I was the sponsor of the Mental Health Parity and Addiction Equity Act and even I couldn’t stay stopped. In other words, I couldn’t stamp off it. It was a very low point, but it was in that low point that I also was reminded I suffer from a chronic illness.

No one would blame me for having another asthma attack. Even if I were to go in environments which stress me out, or [put myself around] allergens that trigger my asthma, everyone would take care of me. I was very conscious of the double-standard: If I had diabetes and gone out and ate couple more pieces of chocolate and had diabetic shock and ended up in the ER, people would have sent me get well cards. Too bad you have that disease, what can we do to take care of you. Instead it became a reinforcement that these issues are looked upon as matters of personal character, not chemistry.

Is it possible that because of your family background you are even more sensitive to the lack of support for mental illness?

My mother is public about it; her struggles have been very public struggles. When I was growing up we didn’t talk about it. She was isolated. We also had cancer in our family, all of our family members. When it’s cancerous its ok to care for you but when it’s mental it’s something they’ll march you out as someone who is kind of weak; someone who can’t pull themselves up by their bootstraps and carry on.

I just think that’s been something I’ve been very conscious about. I’ve obviously felt ashamed myself in my own struggles. I feel that is changing and I feel very fortunate to be part of a movement that’s opening the doors to make sure that future generations, my children, don’t have to fight twice--once to recover and two to overcome the stigma of their illness. What we do with these illnesses is we add insult to injury. It’s one thing to fight the illness; it’s another to fight the isolation and stigmatization that comes from having that illness, that’s why I feel so powerfully about this.

Has sharing your story has been a catharsis?

It’s definitely been a real way of life in every respect. It’s how I relate to the world so I’m no longer alone. I relate to my fellows who are also in the struggle and that makes me feel like I have friends everywhere. By taking up the mental health advocacy is a way to stay connected to my primary purpose in life, which is to stay sober in life and to help others achieve sobriety and recovery.

Seems like it is also a chance to pave a new way for this next generation.

That’s all I’m trying to do. We can’t be perfect; we can just try to the next right thing. I feel what I’m trying to do is resonating with people and it’s giving me a great feeling of fulfillment and I’m getting a lot validation that this is the right way to go. It’s uplifting to know that I’m part of something that’s much bigger than me and it’s important. It gives me a sense of purpose and value in my life.

You can follow Patrick Kennedy on twitter @PJK4brainhealth.