Candid Conversations Key in Bipolar Management, Patient and Advocate Says

Kimberly Allen, MS, LCDC, shares her experiences as a patient living with bipolar disorder and encourages patients and clinicians to have candid conversations about symptoms, quality of life measures, and side effects. Allen will be speaking at this year's Psych Congress on Saturday, September 14th. To register for the conference, visit the event website. Psych Congress Network Associate Digital Editor, Meagan Thistle, moderates the interview. 

For the complete data discussed in this interview, read the report.

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Kimberly Allen, MS, LCDC, is a licensed addiction treatment professional and past fully licensed insurance agent, Kimberly Allen founded her consulting company to use her insurance knowledge and experience to provide consultative services designed for addiction treatment organizations, focused on contract negotiations and the implementation of business and administrative processes related to insurance. Allen is a consultant to numerous national mental health initiatives and is a mental health advocate. She holds a Master of Science in Family Studies, and she is a recreational boxer, trained in boxing techniques used to assist individuals living with Parkinson’s disease.

Read the Transcript:

Thistle: Hi, Psych Congress Network family, thank you so much for joining us. We are here today with Kimberly Allen. Kimberly, if you'd like to further introduce yourself.

Kimberly Allen: My name's Kimberly Allen. I'm a licensed chemical dependency counselor. I have a Master's in family development. I'm a past treatment administrator, but I spend most time... I'm working in insurance and quality improvement in this business and I live with Bipolar I disorder and I've been sober since 1986.

Well, thank you so much again for joining us. We can really jump right into the questions. So 88% of HCPs agree that living with bipolar disorder I makes our patients feel isolated and alone. Did you experience those feelings, do you experience those feelings and what do you feel was the cause of those feelings?

Yeah, there's no question feeling isolated and alone, I think since step one of the diagnosis... I was diagnosed in the 1990s, so I remember and I wasn't very old. I was in my, as I recall, I think it's like 30 years old. So isolated and alone is almost instantaneous. Part of that comes from not talking about something. I also happen to be gay, so I've got a reference plane in that way, beginning around 1990s, what happens if I talk about this? Chances are very good that discrimination will result from that, whether it's in the social aspects of my life, if you're trying to date someone much less get married, certainly in employment.

So that's what it stems from. It's not so much living with bipolar I disorder, it's the impact of the illness in that respect. You're instantly separated from those around you. It's kind of like don't ask, don't tell. So in my case, I'm 62, isolated and alone? Yes. I thought I'm married by 27 years, but that said, this is something that I deal with every day. It's the impact of the severity of living with a chronic health condition, much less mental health.

So thank you so much for sharing that and your personal history. So how have you and your mental health clinician, psychiatrist, and really any... your HCP, how have you been able to work through those feelings and would you have any recommendations for others in the position of living with BD I?

Yeah, I mean, as far as my healthcare team, that's my team. I'm an ex professional athlete. These are my teams, these are my coaches. So I call upon them. I happen to be a boxer nowadays and I look at them as my corner men, for lack of a better word. They're there to keep me in the upright position and also, these people are experts. I pick experts, I don't deal in mediocrity at all. I just don't do that. I'm looking for a high performance and they merit that response from me. One thing I love about them is they know that I'm going to go down. You don't live with a chronic condition and have winning days every day, just like any person that walks the face of the earth. So I try to keep them inspired by me, and I tell them when I meet them, I will be a good outcome. Don't throw the towel. And they don't throw the towel. This is really important.

So if I go back to my corner and I'm crying that day and I'm like, "Wow, this really hurts." I ask them to rally me toward my own goals, and this is what's key. I like to think that I've helped train them as they do me. I hired... My psychiatrist, he is an expert in this illness and that's why I recruited him. He is an expert. I qualify him with that. I look to him to say, "You are having symptoms today. You are not in remission today." So I don't give him a hard time about that. I want him to ask me these questions. These are tough questions. It can be kind of a buzzkill when you're talking to a doctor and they say, "Are you going to die by suicide today?" I remember when I was young, I always think, "Is this obligatory?" I have gotten that question enough to where it kind of predisposed me toward thinking it myself, "Am I going to die by suicide today?"

When I look at that benchmark, I decided to raise that with them. But if he doesn't ask me that, if I get a new psychiatrist and they don't ask me that, in my mind, I think, "Why didn't they ask me that?" I'm aware of what the criteria is. However, that being said, based on the therapeutic side and on the psychiatric side, I compel them to ask about the quality of my life. I help them know what measure that is. For example, instead of just saying, "How's Susie?" When someone asks you about your partner, it's almost like, "How does she think you're doing?" It sort of assigns the value on the Susie side of the house. That doesn't make for a good marriage if she's in control my life, I'm not into it.

So I've taught them to say, I mean, "How are things at home?" I've been married for 27 years. The next question would be, "Are you happy in that? Do you feel understood in that relationship?" So my point is this, and I would say this to other patients also, help the provider know what your quality of life measure is. It's not just being married, it's being happily married. It's not just being a boxer, but having them say, "Are you having fun in the ring?" And the answer is yes. And let them know, how do I go about completing my daily activities? Because otherwise I can't be connected to you. So there's more to it than, "Did you take a shower? Are you eating? Are you going to die by suicide?" Today, they've wanted to say to me, "Hey, champ, how is your upper cut?" And we start right there. "Yes sir, I'm having a good time." So hats off to them, and they're hand selected by me and we don't throw the towel, ever.

I love the analogy there of they're your team and I think that that will translate really well to folks who are living with bipolar disorder, you want to recruit your team. That's a really good way to look at it, in my opinion, and I also think that that helps... will help our clinicians, our audience, reframe. You are your patient's team. So thank you so much for sharing that and sharing some of the things that are good to be asked, not so good to be asked. So 91% and... 91 to 84% of psychiatrists said that symptom relief side effects, respectably, were very important when making treatment decisions. So how often have you had to work with your team to switch your medication due to side effects for greater symptom relief? And then going off of that, are there any side effects that you have had a particularly difficult time with?

Yeah, I mean, first of all, God bless their heart. I know my team. I've had this illness, like I said, since I was about 30 years old, and I'm 62, so you can imagine what my team looks like. For example, I had one Jewish clinician, I call her every Passover and say, "Power to the people. I'm in the upright position, and this is what I'm doing today. This is what I'm doing to contribute to society." So it's so important to celebrate with them also. Now, in terms of switching meds... Countless. Right off the top of my head, I'm going to say a half dozen right out of the shoot. So it's kind of like joining the army. It's like when... and I've not joined the army, but [my parent is] a veteran.

So how I look at it as this, when you start off in this with the team, you're going to face challenges. It's like getting married. I don't expect them to be in love with me on a daily basis. I don't expect us to have a perfect marriage from the very beginning, but I am asking them to dance effectively with me. So I have been hit by friendly fire. I think the intentions of my clinical team for years have been good ones, but they use what they have to give me. I'm concerned about their wellbeing, they give me what they have. There have been times where I've vomited consistently for days. I mean, that wasn't fun at all and I picked up my phone, because that's what you do, you pick up the phone and if you can't do it, you ask somebody else, "Hey, will you help me by picking up the phone?"

But I look at myself independently in this way and I call and I say, "Look, I'm quite ill." I have never had a clinician say, "I don't care about that." They do care about that. So I advise other patients to be candid in that. If you're not having symptom remission, and I want you to know this, I cannot say... my acute symptoms have been lifted for me. So to the people that develop these compounds, not living with an acute symptom, hey, listen, I'll take it. Have I had side effects? Oh my gosh, yes. Dizziness, thirst, weight gain. When I was 35 years old and I gained 10 pounds, I didn't feel like this sexiest girl around. You don't want to go on a date and say, By the way, and this is the harshest one that I've ever had and I have anger about this, but that's the way it is, sexual desire and functioning is a high, high price to pay. It is a high price.

And I got to tell you, I've lived through everything else I just said, I've had many a thirsty day. It's like being a sailor on the deck of a boat and the deck of the boat's going up and down. So you just have to go, "Wow, I'm going to get with the groove of this and wait it out." Usually it means augmentation. They're going to give you something else because they're trying to help you save your own life and I never forget that so when those coaches come in and you're down on the mat and you want to tap out, they're going to put something in your mouth or they're going to give you a shot. I mean, they're trying to save my life and I don't expect perfection in that marriage.

But I will say that when I was first augmented on this illness and it took my sexual desire and functioning, cry is not the word. Isolation does not even cover how it feels. I question myself on the level of my confidence from that day forward. I can't say that I've ever totally recovered from what we're talking about now, so what it requires is candor and to the physicians in the field, to the therapists in the field, I want you to ask people about this. I'm aware that it came up lower on our statistics, but it's because this is very hard to talk about and when you're dealing with young women or young men, but I'll talk about young women, this is my frame of reference, ask the question.

I remember when I was about 50 years old, the first man that dignified me by asking that question, it scared me. I didn't know why he was asking the question, but he said, "Would you like help with that?" Well, what do you think I said? Of course I would like help with that. So that's the harshest one for me and I think we need to do something about this right now. Personally, I think it lends itself to suicide. I think the young people are struggling with this and they report that to me. I'm not the only bipolar I know, so let's do something about that.

So it sounds like we really want to be looking at the whole picture, asking those questions, asking those maybe uncomfortable questions and giving patients the floor to talk about it. So thank you for sharing that deeply personal experience that you went through. I think that will resonate with a lot of our physicians and patients who will be watching this.

Yeah. And I like the way you said that... Not to interrupt you but I like the way you said that. When you live with a tough illness, I'm tough. One time a clinician said to me, "Is this an act on your end? Are you tough?" I thought, "Oh, no, no, I'm that tough." It's like what we say in boxing, you got to be able to take a punch and throw a punch. That's boxing. A lot of times they'll kiss you on the cheek after that. Now we're family. I remember the first time that happened in my life.

But what it means is, if I can live with this illness and I can be tough enough to have you ask me if I'm going to die by suicide or hurt another person, never in my life did I expect someone ask me if they have the desire to hurt another person. So you need to be tough enough to ask me a question and you be uncomfortable with me. So let's get uncomfortable together. Let's disrobe together and let's share some of the tougher aspects so that we lose less young people at this time, immediately.

Right. Yeah, no, again, I just think that will really resonate with our audience and asking those tough questions and getting down to the nitty gritty. And you are tough and you have to be tough to get through these conversations sometimes, and they are difficult. So again, thank you for sharing that.