Suzanne Vogel-Scibilia, M.D. is a clinical psychiatrist and the outgoing President of the Board of Directors of the National Alliance on Mental Illness (NAMI). She founded and operates an independent mental health clinic in Beaver, Pennsylvania. She is also a clinical assistant professor at Western Psychiatric Institute, and is on the faculty of two community hospitals. In addition, Dr. Vogel-Scibilia is a consultant for psychopharmacology projects at the National Institute of Mental Health. She speaks throughout the country on many topics for NAMI affiliates. She has also run a NAMI-CARE, a NAMI-CAN and a Bipolar Support group and has been a teacher for the NAMI Peer-to-Peer program and a speaker for Family-to-Family. She has had bipolar disorder since she was a teenager.
RC: What are some of the highlights during your time as President of the NAMI Board?
SVS: I’ve really had a great time. It’s been an honor and a privilege to serve the people of NAMI who voted in our whole board… I think that our board is a working board. It’s very committed, passionate and very, very cohesive… You know, NAMI is an organization that’s big. There are 220,000 members. People have all different view points. NAMI has always been very welcoming of people with different viewpoints about mental illness. It’s not like we’re just an insular organization. People really get together on our board even if we have spirited discussions, we go with the majority vote, the democratic way, and throw ourselves into the cause. I think we’ve really done a lot of things to solidify our security to be able to really do what we want to do and help people with mental illness because these are very difficult times. It’s like the old Chinese curse – may you live in interesting times. There are so many things - parity laws, Medicaid cuts, Medicare changes, housing cuts, and housing changes. There are all the issues around formularies and access and services. It’s a very difficult time to be a consumer with a mental illness.
And we did a really good job coming up with a strategic plan that has point by point what we want to accomplish between now and 2010. Then we ended up keying our budget to make sure that everything is funded and funded adequately. So we will be able to accomplish what we want to accomplish and we can stay focused on what we do well.
RC: It’s my understanding that NAMI is the only organization that includes both family members and consumers.
SVS. That’s true. And we also have a lot of people who are providers and friends. The four categories [of NAMI membership] are family members, consumers, providers, and friends.
RC: You’re in all four categories.
SVS. I’m in all four. Almost all my friends are people with mental illness simply because what I do with most of my free time with my friends is mental health advocacy. It’s nice too because you have someone who is a friend who understands the issues that you have… I think that that’s one thing about being a consumer and, in my case, a consumer/provider. Within NAMI there are a lot of people who are in the same shoes that I am… It’s very helpful to have a peer group, and a very positive peer group. You know, it is very much a family. We say that mental illness affects families, but NAMI is also a family.
RC: When I first joined NAMI, I went to the local NAMI office in hopes of getting a recommendation for a psychiatrist for my daughter. They said we don’t recommend psychiatrists. But when I asked who their members liked, I was given the names of four psychiatrists.
SVS: What I do a lot of times with referrals – because we have people who move all over the country and Western Pennsylvania is a very rural area - either I have my patients call the NAMI help line or I call them and get the number of the affiliate contact person… One of us calls the affiliate leader and asks, “Who’s a good person in this area?” Then they call and schedule their appointment before they ever move because there’s a wait… We know, especially in the rural areas, it’s easier to get a squad of marines than to find a psychiatrist… And I tell them to definitely get a PCP [primary care physician] because there are so many medical complications, you don’t want to be stuck without someone to address them. So they’ve got those two appointments set up before they move so they don’t end up running out of meds or having problems.
RC: When I moved to New Jersey and was looking for a new psychiatrist, I made appointments with several, met with them in person, and interviewed them all. I wanted to find the right doctor for me since I feel it’s a long term relationship that is critical to my remaining in recovery.
SVS: Well, a lot of times the doctor gets nervous if they find out you want to interview them. So what you can do is just show up for the first appointment without telling them.
RC: I think consumers and family members learn through NAMI that it really does have to be a partnership with your doctor.
SVS: It’s consumer-directed care. Many in the psychiatric establishment don’t like consumer-directed care. They can get very defensive about these kinds of things. The interesting thing is, over the years, I’ve been running a consumer operated mental health clinic – I’m bipolar with psychotic features. I’ve had privileges at many different hospitals… Nurses will often tell me that, “Your patients are a problem and they’re very demanding”. The problem is that there is kind of this paternalist entrenchment about the rules of being a person with mental illness. In the public system, you don’t ask questions, you accept what is given to you, you don’t cause a stir. You don’t assert your needs many times, especially as an in-patient.
The thing is that people come in and say I want to bring in my comforter. Or can my husband have other than normal visiting hours because his vision is limited and he can’t drive at night? And of course I write orders for all of this. Because it’s empowering to have control over your illness in ways that enhance your recovery, not in any way that would be considered dangerous or disturbing. The problem is it just rocks the boat… We have to become more consumer focused and consumer driven in how we provide care to people.
RC: When I was in college, I got a summer fellowship to work at a state mental hospital as a “student therapist.” No one involved in the program knew I had schizophrenia and was actively psychotic. At the orientation session all of the students took the MMPI (Minnesota Multiphasic Personality Inventory). When it came time to review my test scores, the psychiatrist told me that somehow these had been corrupted. He said the results were nonsense and he offered to administer the test again. I asked what was wrong with my score and he said that the score indicated that I was wildly psychotic, schizophrenic in fact. I declined to take the test again.
SVS: I was really undiagnosed and untreated for a long time. I had symptoms as a child. I had mania when I was, like a toddler … But when I was 15, I had a pretty good form of psychotic depression. At the time, I was in my sophomore year in high school and I had a psychology class. [The teacher] gave everybody the MMPI. When they were passing out the results, she said that this is a highly accurate test, but sometimes there’s just some kind of problem, even when the validity scale is correct. Like showing that Suzie has psychotic symptoms. I didn’t know what they were. It wasn’t until I became a psychiatrist that I realized that the test had predicted and screened me in high school on something that nobody realized I had yet.
RC: When I got sick at age 13, there was no question about disclosing. I was sent to regular high school even though I was employing demonstrative behaviors in an effort to fight off the demons I believed were assaulting me. For example, I couldn’t step on cracks. The high school had hard wood floors, so I was tip-toeing everywhere I went in the building. It was overwhelming. Now people ask me how I survived the ordeal. “You’re different,” they say. The point of all this is that I am not different. It was the treatment I got for my illness that was different. The way in which my doctor orchestrated my treatment and the manner in which he counseled me is what made the difference. I was receiving treatment that today would be described as “best practice treatment.”
SVS: I think it’s the issue of how you can make accommodations for disability. Your doctor very clearly understood that there was a need for you to have survival skills and for you to have some time to mature out of adolescence and have some sense of recovery. Because adolescents are in a developmental stage, they don’t have a sense of their own lives. They think they’re never going to die, that nothing bad will ever happen to them. That it’s going to be a direct route to exactly where they want to go. In a sense, adulthood is not that way, but consumers who are young adults don’t have a sense of recovery that an older person has.
RC: They have no frame of reference.
SVS: Right. It’s a new thing. The tornado has just run through the house and thrown their life into upheaval. They are kind of shell shocked survivors as all first timers are. But the thing is just giving teenagers and young adults survival skills and the sense that they are empowered. That there’s hope for the future and recovery is possible. All those sorts of things that you do for other first timers are very, very helpful.
RC: What would you like your legacy to be?
SVS: You have to realize that I have bipolar…I probably have about a grade 2 hypomania kind of running at all times. I make a joke that I have one foot in mania and the other on a banana peel. And so, as you know, I’m always going kind of fast. But the thing is that I functioned very, very well when I had no treatment… I was always able to work well academically and employment-wise even when I was fairly severely ill. What recovery gave me and what treatment gave me was the ability to sustain things without so many ups and downs. I have a much more steady kind of baseline now, which is much better for managing and planning. And also it’s improved my quality of life and, I think, my social interactions and my relationships and things like that. But I think that when you think about a legacy –
RC: It’s a big word.
SVS: It’s a huge word… Being a person of mental illness, I can’t plan something ahead of time because I have no idea whether I’m going to be okay or not… You never really know when you’re going to have that next bad relapse. I’ve had at least a good 12 or 13 years without any major kind of problem. But I never know if I’m going to be alive in a year. I had three suicide attempts before I got on meds. I had a catatonic episode after the birth of one of my children. I’ve had a lot of bad things happen to me. And so I never think too far ahead. I make plans, but I never really think about legacy or things like that. I just kind of live in the moment. But I think what’s helpful is that you have lots of people who are consumers who have come out and spoken and speak very well about mental illness. And have done tremendous things.
The bastion of stigma and silence is really within the psychiatric community. And you know people (psychiatrists) do not want to come out and say they have a major mental illness. I was told by my doctors for many years, before I came out in 1996, that there would be a huge problem when I told people that I have a mental illness. They said that people won’t want to come to you, doctors won’t want to refer to you, it will end your career, and you can pass. Anyone who has been around me for more than five minutes will tell you that the speed of my speech and my psychomotor activity is not consistent with being quite normal, but I’m not that unusual either. I blend in okay.
Other people would always make jokes like they should put lithium in Suzanne’s coffee. They didn’t realize I was in treatment. But in '96, I came out. [It was after she learned that another psychiatrist with mental illness had committed suicide.] And I thought about that. And I said you know it’s the stigma that keeps us sick. It’s discrimination that keeps the stigma going. If I stand up and say I have a mental illness, they say everyone will leave my practice. But I work 90 hours a week. If half of my practice leaves, then that means I get home at a normal time. So there’s no bad risk. And I think that’s one of the things that helps us deal.
People have got up in public and in academia, both psychiatrists and psychologists, and when they got to the point when they were no longer seeing patients and they were going to write or do research, that’s when they came out. Because they think, it’s safe now. But the reality is, here I’m sitting in Beaver, Pennsylvania. Everybody knows that I am this mentally ill psychiatrist at the end of town… And the thing is that nothing really terrible has happened. In fact, it was a freeing experience for me. And that’s what I would say my legacy would be. Is that there really shouldn’t be anything stigmatizing about mental illness.
And you know, if I can at least be one of the few people who have stepped out in the beginning. Just think about the courage of Fred Frese [a clinical psychologist with schizophrenia and a member of the NAMI Board of Directors who has served as the senior psychologist in the very institution in which he had earlier been confined as a consumer]. He has been a mentor for so many years. He has just been a wonderful help and godsend and it’s been wonderful to have him on the board this round. And so everybody kind of builds on the next person that comes. And so I would hope that the legacy that I would have is that someone else uses this as the next stepping stone to try to go and advance this movement further.
RC: I would say it’s a solid stepping stone.
SVS: Well, you know. I had a button on my visor of my car when I was driving into Western Psychiatric Institute during my residency. I was hearing voices and at times I was really quite sick and had terrible side effects. I couldn’t get control of my illness. I was rapid cycling. I had three babies in 40 months. That was a killer. No matter what meds you’re on, if you’re constantly having children and you’re a woman with bipolar disorder, it’s very destabilizing. But the thing was that I had a button on my visor and it said “Hire a manic, we work like crazy”.
RC: One of the wonderful things about NAMI is that it has thrown its doors wide open for all. It continues to reach out.
SVS: The thing I think is interesting is that you really have a lot of us in recovery who have really given a lot of time and effort to this organization. And the family members have worked tirelessly too, but it’s is always good to have more soldiers in the ranks. And so I think to say something about NAMI…in the '80s it was very much a family organization. Then they said that consumers are part of the family, and they welcomed and embraced us. And now we have providers and friends coming in and really expanding the NAMI family. Having that kind of progression is really a wonderful thing for all of us.