Living with Bipolar Disorder and the Stigma of Mental Illness
Paul Jones wason the verge of committing suicide 6-years ago, when somehow he pulled himself together just enough to make it to the doctor's office where he was diagnosed with bipolar disorder. Today, the standup comedian, author, singer/songwriter tours the country talking about the ups and downs of his life and the stigma attached to mental illness. He's also written several books, including: Dear World- A Suicide Letter.
Paul joined us to discuss the various aspects of his life with bipolar and how he copes with the stigma of mental illness.
Natalie is the HealthyPlace.com moderator
The people in blue are audience members.
online conference transcript
Natalie: Good evening. I'm Natalie, your moderator for tonight's Bipolar chat conference. I want to welcome everyone to the HealthyPlace.com website. Besides having comprehensive information on all mental health conditions, we have a large social network. The social network is a place for people with mental health conditions as well as their family members and friends to meet each other, maintain blogs and provide and get support. It's free to join. All you do is set up a user account.
Tonight, we are talking about personal experiences of living with bipolar disorder along with the stigma attached to having a mental illness.
Our guest, Paul Jones, is not only a well-known stand-up comedian, but he's also an author, singer and songwriter. He is 42 years old, married, a father of three and was diagnosed with bipolar disorder at the age of 36; just 6 years ago. Paul is very involved with educating people about bipolar disorder and not only its effect on the individual, but also on family members and friends. He's also written several books, including: Dear World- A Suicide Letter, Life after Suicide: A Bipolar Journey, A Bipolar Discussion: From the Inside Looking In, and his most recent release My Five Key's to living with Bipolar Disorder (purchase these here: www.BipolarBoy.com).
Good evening, Paul, and welcome to the HealthyPlace.com website
Paul Jones: Evening to you and all. Thanks for having me.
Natalie You're an entertainer. Many famous actors and writers, including Robin Williams, Martin Lawrence, Ben Stiller and, of course, Patty Duke, all have bipolar. Some credit the disease with providing them with extraordinary creativity and so, in various articles and interviews, you'll see bipolar disorder even glamorized. In your case, how much truth is there to that?
Paul Jones: Indeed many "famous" and "successful" people have been diagnosed as Bipolar or Manic Depressive; depending on which title you prefer. I have been blessed over the years to have worked with so many very creative people and can say that I think probably 90% of them suffer from some sort of mental illness.
The fact is, I know this illness is not who I am, but it is a part of me, a part that has allowed me at times to do some pretty creative and incredible things. I attribute it to the ability to have many thoughts at a time.
The key is having someone around you who can do something with those thoughts. You know, harvest the good ones and throw away the bad.
Natalie Has it ever crossed your mind that you would not be as funny or productive if it weren't for bipolar disorder?
Paul Jones: To some degree, yes, it has -- but I have to tell you right now, I am not really a person who looks back at what could have been and or what should have been. One of the problems we have in our country right now is people are constantly trying to figure out what could have been. I have enough mental problems and trying to figure out the past is like sitting around planning on what you will buy when you win the lottery. It is a complete waste of time. Would have, could have, should have, all three have no place in my life.
Natalie So our audience can get a perspective, prior to your diagnosis, what was living with bipolar disorder like for you?
Paul Jones: Hell, Hell, Hell, and did I mention, Hell? I think I am not any different than most people living with this illness who have no idea what is wrong with them.
Natalie So, can you please describe what "hell" was like for you?
Paul Jones: I spent the last three-and-a-half years before the diagnoses in depression. No matter how hard I tried, I could not get out. I was on stage every single night making people laugh and praying I would get shot all at the same time. I lost my family, my money and my hope.
Natalie You went to the doctor in August 2000. In an article I read, you mention being extremely depressed at the time. But you had been dealing with this depression for a long time. What kept you from going to the doctor earlier?
Paul Jones: Stigma, Fear, Pride and Stupidity and not in that order. What keeps most people from facing a brain illness? All four of the above and more I am sure. No one wants to have a mental illness, do they? I know I did not. I would take cancer, diabetes, and such. If I have those, then I will have people come and visit me with food and stuff. Have a mental illness and you'll be labeled for the rest of your life.
Natalie And how has your life changed since your bipolar diagnosis?
Paul Jones: This could be a very long-winded answer. I will try and make it short.
My life, since being diagnosed, has been harder than it was prior. Why? Because the day I was diagnosed, I had to participate in my own recovery and mental health. I could no longer say, " I wonder what is wrong with me" because I knew. I could no longer sit in my room and say, "poor me" because I knew. I could no longer look at the mess I had made and blame it on other people -- because I knew.
Many people think being diagnosed makes it all go away. The fact is, nothing goes away, ever. You simply have to learn how to face and handle life again.
How is my life? My life is wonderful because I know. I know and I am back in the driver's seat. Still hitting bumps from time-to-time but I am driving and that is all that matters to me.
Natalie After you were diagnosed with bipolar, what, if anything, did you tell your family, your friends, co-workers? And how did they react?
Paul Jones: Well, this is simple. My license plate on my car read BIPOLAR. Does that answer the question?
I am blessed to have people around me that have been used to me doing, saying and being who I want to be. So letting them know that I have a brain illness was no different than telling them that I had an enlarged prostate. How did they react? I have lost friends and family members because of it. But I have gained way more. The people I lost really meant nothing to me. The only people that mattered are the ones living in my house and me. I was tired of allowing my brain illness to ruin and run my life. Once I knew, again, I am driving this boat.
Natalie Stigma is a very big issue for people with a mental illness. Have you encountered that and, if so, how do you deal with it?
Paul Jones: STIGMA is the number one reason people do not go and get help. STIGMA is the number one reason I go out and speak. Yes, I have encountered STIGMA. As a matter of fact every single day I encounter it. Unfortunately, that is something I will deal with for the rest of my life; especially since I lead such a public life about my illness. I speak and that is how I deal with it. I go out and show young people that they can be whatever they want to be as long as they have desire, determination and drive.
Would we tell a diabetic child they cannot be successful or happy? NO.
Do we tell kids diagnosed with cancer they have no future? NO!
Then why would we tell our children that if they have a brain illness they cannot be happy or successful? I would stack a room full of Bipolar people up against a room full of diabetics any day. We will kick their read ends :-) Seriously. People who are Bipolar who are active in their treatment are just as, if not more productive than anyone else. The key here is "active in treatment."
Natalie Could you give us an example or two of times you have faced stigma from having bipolar disorder?
Paul Jones: I do not think I have to tell anyone here what it is like to lose your cool and have people ask if you have taken your meds. Usually, it is something simple. I also cannot get life insurance and or other types of insurance.
Natalie Paul, here is the first question from the audience.
aliwebb: When I am manic-mostly I am great. When I am down, it doesn't make a difference who loves me or who is supportive or anything good that happens or how good life is- nothing could feel worse than being alive and for no reason. Is your's ever so horrible?
Paul Jones: It was, yes. I have to tell you this. After multiple affairs and pushing my children all but out of my life, I finally realized I needed to get some serious help. I used to sleep in my closet when I was on the road. Imagine! A 30-year old man sleeping in closets and under beds.
Lavendar: My fiancÃ©e is bipolar. What would you suggest I do to be able to help him effectively cope with everything?
Paul Jones: Let me ask this: is he seeking, getting and complying with help? That is the big issue. If he is not getting help or being compliant, there is not much you can do. You cannot force insulin on a diabetic, therefore they loose a foot. I am very harsh when it comes to compliance. I have not missed one single pill since being diagnosed
Lavendar: Yes, he is.
Paul Jones: Then you are lucky. Be supportive and all should be good. He has to stay compliant. Good luck.
Linds... thats me!: Hi Paul can you tell us what your LOWS are like?
Paul Jones: I am very lucky today. Since re-working my medication about 7 months ago, I am happy to say I have been pretty stable. Prior to being successful with medications, the lows where a very, very dark place for me, just as for most. I spent most of my days hiding. I only came out when it was time to get on stage and do a show. I cried in my car almost every road trip. As a stand up comic, you spend a great deal of time alone. Being depressed and alone is hell. I never want to be there again.
Natalie Here's a good question, Paul.
kf: I am compliant, but how did you deal with people from your past when you were ill?
Paul Jones: Well. are you ready for my answer? Do not ask if you do not want it.
To heck with them.
In that I mean this: I cannot change one single thing I did. Nothing I do, say or try and do will make it go away. I made many phone calls. I did not say I was sorry. I said I was sad that those things happened. One of the tough things we have to do is get through the past. You cannot drive your car looking behind you. Come to terms with it and move ahead.
Fragileheart: How has shame affected your ability to function and get help? Has shame been an issue for you?
Paul Jones: I was filled with Shame, Guilt, Sadness and downright Sickened by me....by me. I could not get past the fact that I had let something as simple as a brain illness control my life. I was sad that I let all that time go. All I had to do was seek help and at the very least I could say I was doing something. It is not easy to keep my brain healthy, but then again nothing in life is easy, except failing.
kitcatz: There's such a fine line between feeling good and hypomania, which always leads to mania. How do you know the difference and how do you cope?
Paul Jones: I do a lot of self evaluation. I am healthy enough now that I know and remember what it was like to be Whacko. I no longer will make a big purchase without letting 30 days pass. I do not start any major projects without having the prior one finished. I own a productions company so this is key for me. I have to try very hard to keep myself in check. Then I have my wife and children who are a major part of my treatment. They are no longer out of the loop. They are the loop.
Natalie Paul, you wrote a book entitled "Dear World- A Suicide Letter" describing a period in time in which you were seriously contemplating suicide; in fact, on the verge of committing suicide. It is not uncommon for people with bipolar disorder to think about suicide. What was going on in your life and in your thoughts at that time?
Paul Jones:Dear World- A Suicide Letter is just that. It is my Suicide Letter. I was sitting at my desk, writing my final words. I was going to kill myself that morning. It is not a book that was written, it is the actual letter itself which I was talked in to publishing. Had I not sat down to write the letter that morning I would be dead right now. I would have never gone home that day. What was going through my mind? Nothing, nothing but being dead. I was dead, I was a dead man walking. I was tired of fighting, I was finished with the pain, I was done.
Natalie What kept you from committing suicide?
Paul Jones: After writing for over 7 hours I had come to the conclusion that I was lying to my children. I was lying to all the kids I had coached for all the years in soccer. I have told my kids and the children on my team " you never, ever quit" and here I was quitting. Once I realized I would be remembered as a liar, that was all it took. I hate liars, I cannot stand liars and there was no way my children were going to look back on everything I had told them and say I lied. I did not stay alive for my children that day, I am alive today because I refuse to be remembered as a liar.
Natalie You are now taking medications to stabilize your moods and control the manic and depressive episodes. How do you feel about that?
Paul Jones: If I was a Diabetic I would take meds. If I had high blood pressure I would take meds. This is no different to me, I am in. You have a pill that can and will allow me to live life. I am IN.
Natalie I know this may be getting a little personal, but are you feeling any side-effects from the medications and how are you dealing with that?
Paul Jones: You can ask me anything. I am a open book. I can run for office without fear.
Side Effects....got to love them. I could go on for hours here due to the meds taken over the years. But I will give you two:
SEX - Once I realized my equipment was not working the way it once had I immediately called my doctor - at 3am by the way. I said, "hey Steve, I am lying here next to my wife at 3 am naked and we are just talking" You learn how to deal with things, you really do. My equipment working properly is important yes, but if my brain is sick I could really care less about it and or my wife anyway. So again, you have to decide what is the most important thing.
Next is FAT FAT FAT - I gained a lot of pounds for me due to? Nope not what you're thinking. The answer is not because of my medicine. I gain the pounds because I increased my food intake and did nothing in the form of exercise. Again, you have to participate. Late November I got out of the shower in my hotel room and as I pulled the shower curtain to there was this huge fat guy in my room. I took a close look and low and behold it was me. I could not believe what I have allowed myself to become. December 1 I started back to the gym at 243 pounds and today, March 27 I am about 197.
Participate. Like I said, we know what we have to do... we are just un willing to do it.
Natalie When you meet someone, do you introduce yourself as having BP within a first conversation?
Paul Jones: My license plate says BIPOLAR on my Car.....does that answer it?
I do not say hi my name is Paul and I am Bipolar......EVERY ONE ...HI PAUL,
I do not hide from it but usually it does come up. They see my car or they have read my books.
Natalie: We have more questions from the audience.
lisaann: You said you have been doing really well since your med change 7 months ago. What do you do if the symptoms reappear? How do you cope with the recurrence of them? I find that the biggest challenge of this illness.
Paul Jones: You are correct. I do not jump until I do a little searching.
1-Is my depression due to life....you know, "life sucks...."
2- Have I done something wrong? Have I been eating too much bad stuff, have a drank something wrong or such?
3- Have I been getting too much sleep?
If the answer is no to all, then I pick up the phone and call my doc. If I have to start over, I start over. I have had to do it 3 times now and will do it again I am sure.
Gene7768: Looking back now, how long do you think you had the disease, when did it start, and why did you not realize you had it?
Paul Jones: I can see that it all started around age 11. As a child, I had no clue what was wrong. I was not about to tell my parents I wanted to kill myself. Heck, Dad would have said, don't use my tools and mom would have said do not get blood on the carpet. As I grew older I knew I had an issue but was not willing to be labeled.. The truth is I was labeled, I was the one doing it.
allie82: Do you hear voices with bipolar disorder?
Paul Jones: I personally do not hear voices per se. I do, however, have or had strong feelings that I should do something like give my money away or start a huge project.
Natalie Allie82 - if you are hearing voices, that is significant and can be a dangerous signal of psychosis and I hope you'll talk to your doctor about that right away. For everyone here, go here if you are looking for detailed bipolar information.
Linds: How do you cope with people around you that don't suffer from the illness. I find it hard to connect with people. I'm losing friends because of this and its only making me worse. How do you deal with people like that?
Paul Jones: Look....you cannot make people understand what you have. They will either decide to realize it is real or not.
How do I deal with people who do not think it is real? Do you really want to know? I get rid of them from my life. Poisonous people have no place in my life. I have a hard enough time with my own life. I do not have time to try and educate the un-educable. Does that make sense? We try too darn hard to make others understand.. Try and get yourself better, then work on the other. You are a wonderful person I am sure. Treat yourself like one.
Linds: Definitely does make sense. Thanks Paul. You are legend, and I love Robin Williams too.
Paul Jones: Thanks much. I try.....:-)
One more thing Linds. Please stop letting other people bring you down.. Take those people out of your life plan for right now. You deserve a good life. Go and get it. Take care of your brain. It needs. you to take care of it. Feed it right, treat it good.
Natalie Paul, do you see a therapist of some sort? If so, do you find that helpful and in what way?
Paul Jones: Honestly, my speaking has become my therapy. It works out well because I like to talk and I do not have to share the stage. I know that groups are good for people. They just do not fit in with my life. I am on the road a ton, I speak to thousands of people a year. I call those my sessions. You have to share and I get a chance to share everyday.
Natalie What other things do you do to stay healthy -- when it comes to bipolar?
Paul Jones: I am working out, drinking tons of fresh water, eating right and most importantly, I stopped smoking.
Natalie When you compare yourself before the diagnosis of bipolar disorder and now 6 years later, how do you feel about yourself?
Paul Jones: I am AWESOME...I mean that. I feel so much better about myself, my life and what I am doing. I love to drive my car and in this case, my brain is my car. I am blessed to have this illness, I am blessed to have all the mistakes I have in my past. I am blessed to have gone through all the hard times I have. It is because of my past that today is so grand. Without the past and learning from it I would not be who and or what I am. My children would not be who they are. My wife and I would not be getting ready to celebrate our 25th anniversary. I am blessed. I would not change one thing, not one. Because changing anyone thing may alter the way today is and I am golden with today. It is not easy, and it is not always great but that is called life, and I for one, am enjoying the ride.
Linds: Absolute legend.
peacefuldolphin: That is great BPBoy.
teet: You are awesome.
kitcatz says: Thank you.
Gene7768 says: Thank you so much.
chrisuk says: Thank you Paul.
Paul Jones: Thanks.
Natalie Our time is up tonight. Thank you, Paul, for being our guest, for sharing your personal experiences with bipolar disorder and for answering audience questions. We appreciate you being here.
Paul Jones: Thanks for asking me and be sure to stop by www.BipolarBoy.com from time to time. It is not as fancy as this site but I call it home.
Natalie: I encourage everyone to sign up for our mailing list. It's free and we'll notify you of other events happening on the HealthyPlace.com website. I also invite you to sign up for the first and only social network for people with mental health conditions as well as their family members and friends.
Thank you everybody for coming. I hope you found the chat interesting and helpful.
Good night everyone.
Articles by Paul Jones
- The Day I Was Diagnosed as Bipolar
- Sharing A Diagnosis of Bipolar Disorder With Family And Friends
- Techniques and Tools for Dealing With Bipolar Disorder
Disclaimer: Please note that HealthyPlace.com is 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 and/or therapist BEFORE you implement them or make any changes in your treatment or lifestyle.
Last Updated: 31 March 2017
Reviewed by Harry Croft, MD