Living with Bipolar Disorder
online conference transcript

Two of our journalers, David and Jean, discuss what it's like living with bipolar disorder, from hypomania to severe depression.

They also shared how being bipolar affects their relationships and what treatment for manic depression and bipolar medications they use to control the symptoms of bipolar disorder.
 

David HealthyPlace.com moderator.

The people in blue are audience members.

David: Good Evening. I'm David Roberts. I'm the moderator for tonight's conference. I want to welcome everyone to HealthyPlace.com. Our topic tonight is "Living With Bipolar Disorder." Our guests are Jean and David, two of the journalers in the HealthyPlace.com Bipolar Community. I'm going to tell you a little about each and you can click on their names above to read the biographical sketches each sent me.

The reason I invited them here this evening is because I thought it would be interesting to have two "regular" people talk about how they experience bipolar disorder and how they cope with the different aspects of it, instead of inviting an "expert" on to talk about how it should be done. I'm going to talk to them for about 10 minutes each and then we'll open the floor for your questions and comments.

David is 30 years old. His parents first noticed symptoms of manic depression when David was 4. He has been married for 11 years and is a photographer and digital artist. David's bipolar journal is here.

Jean is 49, married twice with a total of 5 children from both marriages. Jean is unusual in that her bipolar symptoms didn't first appear until 5 years ago, when she was dealing with the stress and depression that stemmed from the autism diagnosis of her fifth child. The doctor prescribed an improper dosage of an antidepressant and six months later she became hypomanic.

Good evening, David, and welcome to HealthyPlace.com. So we can get a little better feel for who you are, please tell us a bit more about yourself?

David W: Hi. It's nice to be here. I have been bipolar for most of my life and go up more than down. I actually feel that there are advantages to being bipolar, although it makes life difficult at times. I'm a rapid cycler, so no mood lasts too long, usually.

David: You mentioned having bipolar most of your life. How did your family members deal with that?

David W: Pretty well for the most part, but I was not taken to a therapist or anything. My father is a pastor and counselor and dealt with most of my issues himself. I hid my depressions for many years, and since I go up more than down, it was assumed that I was only a very active and creative child.

David: Why did you hide your depression?

David W: I didn't understand it. I was ashamed to feel so bad for no reason. I felt like I was supposed to just have faith or choose to be happy. I didn't know how to express suicidal thoughts at 8 and 9.

David: In your adult years, have you been able to share with your family how you feel and the impact that bipolar disorder has had on your life?

David W: Yes. Thankfully, my family has been very supportive and helpful. I wouldn't have made it this long without them.

David: What do you attribute that to? I ask that, because many people are afraid to share things like this with their families for fear of rejection.

David W: I attribute it to many nights of my opening up and telling them exactly how I feel and what's happening in my mind, even when it's embarrassing. I am sometimes to scared to say it or unable to, and I have written them letters, much like my bipolar journal entries. Mainly, I attribute it to their love for me. I am lucky.

David: It sounds like you are fortunate. One of the other things about your situation is that you have been married for 11 years to the same person. It seems to me that given your bipolar, this is a bit unusual. How have you managed that in your relationship?

David W: I married a great woman. I know that sounds simplistic, but I really don't know how else to answer that. I can't imagine anyone else putting up with me that long. I have even not wanted to. It hasn't been easy, but we are happy now.

David: And I say "unusual" because many times, having a person with a mental illness in the family puts a lot of stress on the relationship. Maybe you could share with us what it's like for you to be, first, manic, then depressed.

David W: Well, as I mentioned before, I go up more than down. My "normal" state is a low grade hypomania. When I go up, I vary between low mania and extremely high mania. I have psychotic manias that get really hard to deal with and are quite frightening at times. The depressions for me usually go too far down or last too long, but after an extreme high or if it lasts a long time, I become suicidal quite often.

David: Now, when you use those terms, low mania and extremely high mania, can you describe what that's like for you?

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David W: The low depressions usually consist of lethargy and a desire to sleep a lot. I find myself with little or no energy and just feel bad, both physically and mentally. It's like being in a fog of darkness in my mind. The high manias are worse. I have absolutely no impulse control at the extreme high end. My thoughts race until I can't think about anything and I experience "white noise" and hallucinations. I sometimes have periods of "lost time" that I can't remember what happened.

David: We have a lot of audience questions for you, David. Before we get to that, can you please tell us about your experiences with treatment for bipolar disorder. Have you received any? Has it helped? Are you taking prescribed bipolar medications?

David W: I have been receiving treatment for almost three years now. Before that there was a lot of self-medicating. It has helped, although I am still cycling fairly regularly. I am on several different medications. I take Neurontin daily and Zyprexia to control psychotic symptoms and mania as needed. I also take Wellbutrin as needed for depression.

David: And just to clarify, by "self-medicating," you mean what?

David W: I started using drugs and alcohol as a teenager in an attempt to somehow "fix" what was wrong with me. Although I didn't understand it, I knew that I had mental problems.

David: Here are some audience questions for you, David:

lizzyb_74: David, when you are manic are you more agitated and angry with a lot of energy behind that?

David W: On the low grade manias, I am usually euphoric and feel great. I do not tend to be dysphoric. I do have a lot of energy and have gone days without any sleep. I do sometimes become angry and agitated if I go really high.

ronnie@tnni.net: David, a couple of year's ago I became very manic, and it lasted for days. I hated myself and my mind raced so much I wanted to die. Did this ever happen to you? Is this the worst side of bipolar or does it get worse?

David W: Yes, that has happened to me. My manias often last for weeks. It can get worse.

David: Earlier you said that you suffered "psychotic manias." Can you describe what you go through?

David W: What I refer to as psychotic manias consist of extreme confusion with racing and scattered thoughts. Add to that mix hallucinations and episodes of time passing with no memory or understanding of it, and it gets very scary.

jpca: David, do you hear voices and see people who really aren't there?

David W: I usually don't see people, but I have seen "creatures" and other visual hallucinations. Yes, I do hear voices at those high-end manias and occasionally at the low end as well.

David: I'm getting some questions about what manic depression is and the signs and symptoms of bipolar disorder. You can also get that information by clicking on this link. And here's another story from one of our site masters, Kathryn, on what it's like living with bipolar disorder.

crafty: Here is a question for David. Have you ever, in a psychotic state, forgotten where you are going or what you are doing?

David W: Yes. Those are the periods I call "lost time." Actually, that happened the other night. I was looking out at a lake and watching the stars from my truck and the next thing I remember, I was standing on a pier over the lake and the sun was up. Four hours had passed. I have no memory of what occurred.

woodyw3usa: Is your bipolar medication working?

David W: Believe it or not, I am actually much better at the moment than I was unmedicated. So yes, the medication is helping a lot, but I don't think I would say it is working since I am still cycling so high.

David: I have a few audience comments here and then I'm going to bring on Jean, our second guest tonight. I'll interview her for about 10 min. and then we'll take some more audience questions for both our guests.

ronnie@tnni.net: I was on my own with this illness. I didn't have parents to back me up. I never knew what was wrong with me until 13 years ago. The family was sick. Father raped me and mother put me in the middle of it all. I imagine it is so helpful to have your parents on your side.

Butterfly998: I am glad there is someone out there.

woodyw3usa: I agree, maybe another combination may work for you. I self medicated for 20 years before I got under control.

crafty: David, I once started to my Mom's house and couldn't remember how to get there.

David: Jean is 49, married twice with children ages 23, 21, 10, 9 and 7. She first started showing signs of manic depression five years ago when her fifth son was diagnosed autistic. His older brother (child #4) is autistic as well. For more about Jean, you can click on this link.

Jean became depressed and very stressed dealing with the autism diagnosis and was put on antidepressant pills for the first time in her life. Apparently, she was given an improper dosage and then became manic. She was hospitalized for six days. Here is Jean's bipolar journal.

Good evening, Jean, and welcome to HealthyPlace.com. One of the things I found interesting about you was that your family thought that mental illness is something that should be hidden from public view. Your mother wanted to institutionalize your two autistic children. I'm wondering how that impacted you when you discovered you had bipolar disorder?

Jean Y: I actually thought that as soon as I came home, I was fine. That was five years ago. In fact, it wasn't until this year that I came to grips with the impact and confusions I have had to deal with because of this disorder.

David: What impact has bipolar disorder had on you?

Jean Y: Now that I realize that I have this disorder and am not just the same old me, I am quite angry. I find that writing in the journal helps assuage this.

David: What aspect of it are you angry about?

Jean Y: I am angry that I spent time working so hard on my family and just pushed it to the side. There are many interesting aspects of it. I do believe I am a creative person, and this plays a part. However, I am fearful at times that my children might be taken from me, simply because I am bipolar.

David: Have you actually been threatened with that?

Jean Y: No! But I was really really sick when I was hospitalized and there were a lot of people working with my autistic children in and out of the house. My behavior was so aberrant, there could have been a time...

David: From what I know, many people with bipolar or other mental illnesses, live with different fears, but they are "extreme fears." How do you deal with that in your life?

Jean Y: Strangely, I have always been a very happy person until this depression and mania that occurred after my second child was diagnosed with autism. Then I did become anxious, almost agoraphobic. I didn't like driving anywhere, for example. I made my husband pick up a lot of the slack for ages.

David: Did that impact your relationship with him?

Jean Y: He is divine. He is extremely understanding. Frankly, he saved my life. He literally DRAGGED me to the hospital.

David: What about your ability to work?

Jean Y: I do not have to work, fortunately. But I am very intense, and I write at home. I have been published as a writer in several small publications.

David: Do you think you could work, if you had to?

Jean Y: HAHA. GOOD QUESTION! Could I be an actress?

David: One thing before we get to more questions -- what kind of treatment for manic depression have you/are you receiving including therapy and bipolar medications; and if you are getting treatment, has it helped?

Jean Y: My treatment has been essential in maintaining my health. I go to an excellent psychopharmacologist who monitors my medications and listens to me yell and generally is a terrific person. When my lithium wrecked my thyroid, he switched me to depakote, and together, within a week, I was ok - not high.

David: Here are two audience comments regarding having bipolar disorder and children:

lizzyb_74: Jean, I have been hospitalized many times and I have a son and he has never been taken away from me because of that.

ronnie@tnni.net: Jean, my children were taken from me because I was sick, and no one could diagnose me for 48 years.

Jean Y: This saddens me deeply.

David: Ronnie, I am sorry to hear that. Jean, here's the first audience question:

BHorne75: Jean, how do you manage the stress involved with having 2 sons with autism so that it doesn't trigger another manic episode, if that's possible?

Jean Y: Hello my friend. I laugh a lot, I take my meds religiously - every day - and I yell around the house loudly. Good thing we have over 2 acres of property!

David: Jean, has your bipolar disorder affected your children in any way or the way they relate to you (including your older children)?

Jean Y: Yes. My oldest is afraid to come to this site and read my bipolar journal. He is 23. He doesn't understand that my illness is not "me" - just part of me. My second oldest is just, totally, not interested. He is in college. I am concerned that one of my autistic children may have bipolar disorder, underlying his disorder.

David: Here are a few more audience comments:

snugglez: I understand you. I have a sister who is 17. I am 16 and she is afraid of me because of some of my past actions.

rayandkat1: First I was ashamed, then I was in denial. Now I am just proud. I think it is nice to be able to say, yes I have bipolar, but I am still as successful as the next guy/gal.

woodyw3usa: I am bipolar and have an 18 year old daughter who was diagnosed at age 14. She is still having a rough time.

tnm1133: Jean, I just went through a divorce and have three boys, 6, 6, and 5. I have very little help and go to school full-time. My ex is trying to exploit the bipolar. I am off meds because of this, and I am deeply involved with my boys. Do you ever experience feeling like you are under a microscope because of the disorder, even having support?

Jean Y: I spend a lot of time thinking. I put my own self under a microscope, in a sense. I am concerned when I go to school meetings, and they know about me, that they are thinking of the effect it has on my children, yes.

David: I want to bring David in on this next question because many with manic depression go through a deep depressive phase, like you mentioned earlier. Do you actually feel that coming on and is there anything you can do to deal with it?

David W: Right now, I don't feel the depression coming on, but I am actually manic at the moment. It is varying between high and medium level. Luckily, right now, it's not high so I can do this. But I know that what goes up must come down, and the crash is coming. It worries me at times, but I don't think about it much when I feel euphoric.

David: But when it's coming, is there anything you can do to prepare for it or reduce the level of severity?

David W: Yes. First is the communication with my wife, so she can help me deal with a quickly changing mood. Another important thing is to try to force myself to sleep and rest. Finally, writing out my feelings and making sure that I am in a place where I feel safe sometimes helps keep the depression from being too great. I watch a lot of films as an escape from the darkness as well.

David: How does your wife help you deal with a quickly changing mood? What kinds of things does she do, specifically?

David W: When I quickly slip into depression from a high mania, it is very hard on me emotionally. She does several things to help me deal with that. She will stay with me and let me know that I'm not worthless or useless or hideous or a host of other things that I feel when that happens. A lot of time spent being held by her often helps. Also, when I need to just be left alone she is good about doing that. She also encourages me to spend time with my support group.

David: Do you go to a face-to-face manic depression support group or an online bipolar support group? And how does that help?

David W: I use a few online bipolar support groups. The closest face-to-face one to me is an hour away, and I am not really able to do that. It helps a lot because I can talk to people who really understand what I'm feeling because they have been there. They listen to me and encourage me with understanding and experience. Also, I can get on Instant Messenger and talk one-on-one with a friend who knows how I feel if I am in a bad place.

David: I have a few site notes, then we'll continue with the audience questions.

Here's the link to the HealthyPlace.com Bipolar Community. You can click on this link and sign up for the mail list at the top of the page so you can keep up with events like this. You can read the bipolar journals and post your comments on the journalers' bulletin boards.

• David's journal is here.
• Jean's is here.

And we have others who keep online bipolar diaries in our bipolar journaling community, so I encourage you to drop by. From reading the journals, you'll find out you are not alone, I promise.

We have several excellent sites that deal with many aspects of Bipolar Disorder / Manic Depression. "A Manic Depression Primer" and "Catching A Darkness" and there are other sites too.

Also, if you haven't been to any of our Bipolar support groups, I encourage you to join in. We have trained hosts who run each group. They do a great job and we get lots of email from our visitors talking about what a great experience it is. Here is the schedule for the Bipolar Support Groups.

Of course, we have hosted support groups on our site for many other mental health topics. Here are more details and the schedule of all support groups at HealthyPlace.com. If you are interested in hosting a support group focusing on bipolar disorder, depression, or any other mental health topic on our site, please go here.

And, if you have a topic or a guest that you'd like to see appear for a conference here at HealthyPlace.com, drop me a line at info@healthyplace.com and put the words "conference idea" in the subject header. We get a lot of our guests from visitor suggestions.

Here is the next audience question:

tnm1133: David, have you ever attempted suicide, and if you did, can you relate to what you were feeling at the time now, in a higher state?

David W: I have attempted suicide more than once, I am afraid to say. The last time was in October of 1999. My father found me in the last minutes that I could still be helped. I can remember what I was feeling and know what was happening in my mind, but no, I cannot really look back and feel those emotions while I'm in a manic state. I could write an essay or poem about them describing the sensation, but not feel it.

Donna 1: Jean, do you see any signs of bipolar disorder in any of your children?

Jean Y: Yes Donna. I am afraid that my older autistic son, my fourth boy, may be bipolar underneath his autism, but we don't know yet because he is nonverbal. He gets very euphoric and abusive very rapidly.

David: Here's an audience member in a similar situation, Jean.

wwoosl: My 8 year old has bipolar and is very violent. We are considering placement.

Jean Y: I am so sorry. My heart goes out to you.

kayfa37: I'm really nervous about my 5 year old son who is showing signs of panic and anxiety. He also has full blown migraine attacks. This is how I started. I really want to know about David being bipolar at age 5.

David W: I can remember times of just sitting in the yard and crying for no reason, but most of the time I was up and just couldn't sleep. I had really vivid dreams and can remember some of them even today. I was never deeply depressed at the extreme young age, but I was already having a few hallucinations.

David: For parents with bipolar children, please read this transcript from our excellent conference on Mood Disorders in Children. On your previous comment on suicide:

tnm1133: David, thanks for sharing that. I have had several serious attempts and am really ashamed of it and can't relate to it at all. It's as if I were another person.

David: And, here's another comment on the possibility of passing bipolar onto your children:

rayandkat1: I work in a medical research clinic and I see bipolar patients all the time. A lot of parents that have bipolar are afraid their children may obtain it from them. It is very possible, if a family member has depression, bipolar can develop in the children as well.

David: I should mention here that we've had several "expert" guests talk about bipolar treatment and the genetics of bipolar disorder. The transcripts are here.

David: For David:

bre5800: How does being bipolar effect your photography?

David W: I think that I am able to see things a little different from most people. When I am hypomanic or low manic, I experience high levels of creative energy and a strong flow of ideas. That helps a lot. Also, at low up times, I can really relate to other people and put them at ease, which helps with live subjects. The "life of the party" symptom.

David: Someone asked about books on bipolar disorder. Please check out our online bookstore. You'll find many excellent books on the subject there.

seankmom101: David, how open are you about the disorder?

David W: I am very open about it now. I used to be ashamed of it and hide it because I was afraid of rejection. I have struggled to accept myself for who I am, and now that I have done that for the most part, I have decided that if others can't accept me for who I am, then I don't want them to accept a mask I put on to hide who I am.

Also, I have found that I can help other people understand that there are people, like me, who are not in institutions and can be accepted. It helps take some of the fear away from the idea of mental illness.

David: There are many people out there who are looking for the "right way" to share their disorder with someone they care about. Jean, you can answer this question first, then David can respond.

crafty: I would like to know how to tell my family how I feel being bipolar and what it's like. They don't seem to understand me at all and it upsets me.

Jean Y: I think that you need to express the aloneness of this disorder and how very hard it is to maintain a semblance of being a part of the world without their help.

David W: Expressing how you feel is important, as Jean said. I would add that I understand that talking to your family and explaining these feelings and moods is difficult. Sometimes when you start talking to them, you lose track of what you are trying to say and go off on different areas as the conversation goes on. Or if they are not reacting like you expected, it can throw you too.

You might try sitting down one day when you can think fairly well and write out exactly how you feel and what you want them to know. You can then give the letter to the family member that you are most comfortable with, and write down at the end that you would like to discuss it with them once they have read what you wrote.

David: Those are all excellent suggestions. One of the things to remember is that others haven't had the experience like you have. It may be difficult for them to understand at first. It may be helpful to copy some things off the internet or give them a pamphlet or a book on the subject. And I know that this may be difficult, but it's important to be direct. Not unkind, but direct. Tell the person exactly how you feel and what, if anything, you want from them, because many times, after someone tells their story, the other person is left wondering "well, what can I do." It's kind of a helpless feeling.

catherinel: I struggle sometimes to determine what a 'normal' range of emotions feels like. Is this true for others?

David: David, why don't you take that.

David W: To be honest with you, I don't really even understand the concept of "normal." I think that is because I have had this disorder for my whole life and have a hard time knowing what is part of my illness and what is just my personality, but I have an idea of what is normal for me, and I do have problems recognizing that at times.

David: Jean, this is for you:

tnm1133: I have a real problem with my family (parents, brother, and sister) looking at my disorder as it suites them. Now that I am going to school, everything is fine, but when I am hospitalized it has been viewed as if I have failed, and the suffering and isolation that I am feeling is totally discounted. I have realized that they have some problems in their own lives though. Have you had any similar experiences? Kind of a double standard?

Jean Y: Absolutely. My sister thought I was fixed after I came out of the hospital, and I would never have an episode again. My father never discusses it. I lean on my husband and leave them out of it because it, frankly, would take too much effort for me to bother to bring it to the fore. My children take enough out of the family - you know?

David: I want to mention that our new Bipolar bulletin board is up. You can reach it by clicking on this link or by just clicking the "forums/bulletin boards" button at our chat login page. You can't miss it because it's hot pink. We're hoping this area will become another great support area where you can share your stories, information and experiences with others. About once a month, we will also be doing a special event in the bulletin boards area. So, keep your eyes out for that in the newsletter.

I just realized how late it is. Thank you, David and Jean, for being our guests tonight and for sharing this information with us. And to those in the audience, thank you for coming and participating. I hope you found it helpful. We have a very large and active community here at HealthyPlace.com. You will always find people in the chatrooms and interacting with various sites.

Also, if you found our site beneficial, I hope you'll pass our URL around to your friends, mail list buddies, and others. http://www.healthyplace.com

Thank you, again, Jean and David.

Jean Y: Thank you for having me, David.

David W: I am glad to have had this opportunity. Thank you.

David: Good night, everyone.

Disclaimer: That we are not recommending or endorsing any of the suggestions of our guest. In fact, we strongly encourage you to talk over any therapies, remedies or suggestions with your doctor BEFORE you implement them or make any changes in your treatment.

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