A Short video about my journey with bipolar disorder.
There are days when I see myself as “less than.” Less than what? Less than the general population who gets up and goes to work everyday. Less than the people I used to work with who have risen high on the Corporate America success ladder. Less than even some people who have recovered from mental illness and seem to have left their struggles in the dust.
I feel less than fulfilled with my current life. I make a point of spending my time writing everyday, which gives me tremendous value. But my overall everyday life pales in comparison to my past life before I was really hit with bipolar depression.
So I ask myself the question, how can I exists without feeling “less than” as a human being? For starters, I am aiming to make my comparison a little fairer. What do I mean by making it fairer? Well, it’s not fair to compare a basket of eggs with a basket of oranges. After bipolar disorder took me down hard I had to recover from a series of major episodes. The fact that I am capable of doing all that I currently do is a tremendous success. But comparing my life now with the past and before bipolar disorder really wrecked havoc is simply not a fair comparison.
I am willing to bet I am not alone in feeling “less than.” I am sure there are other people out there who feel like they were so much better before a mental illness disrupted their life. I want to say to them, “you are not alone.” It does not make you feel better to know other people suffer the same plight, but it certainly puts things into perspective. It allows you to realize other people are carrying the same or similar torch. Plowing away each day, trying not to get caught up in letting the “less than” feelings dominate.
Part of the problem with feeling “less than” nags at the self-esteem and tears down self-confidence. Many of these feelings are so “normal,” but somewhere along the way we forget to address them. We end up with an overflow of bad feelings about ourselves and we don’t know what to do about them.
I have truly found that if I hit the nail on the head with something I at least have a chance at knowing what to do with it. So if I call out a day when I am really feeling “less than” I will acknowledge that feeling. I can then talk my way through the bad thoughts I may have about myself. The more I realize the thoughts are very “normal” for some reason the more strength I gain. Instead of going through my day feeling worse about myself, I can grab onto what I do well and build upon that instead.
I have always heard it is not a good idea to compare yourself to others, so why would I want to compare my life to someone else? Not a good idea. I have to keep reminding myself that I am not “less than” just “different.” And that “different” is simply okay.
Living with a severe mental illness is not for the faint of heart. You really have to be tough “minded” to handle the many trials and tribulations we face. Consider being able to successfully utilize your mind to climb the corporate ladder only to have that same mind fail you by losing touch with reality.
Imagine having your sister make her way through college and graduate with honors. Then a few years later imagine getting a call from a social worker, four hundred miles away, telling you your sister was placed in the psychiatric ward for evaluation. Forty plus hospitalizations later and an immeasurable amount of heart ache for everyone involved just can’t be described with words.
Imagine being a freshman in college and learning your mother had a manic episode rolled into psychosis and jumped from a 30-foot balcony in her confusion. Imagine the pain, despair, and confusion those emotions can be when you are living through it.
Some people would say they just “can’t imagine.” Besides who would want to put themselves in your shoes with such human tragedy. These are the stories that never make it to the vernacular of the general population. They have no reason or purpose for hearing or listening to some of the challenges those of us touched by mental illness have had to deal with. I’ve only briefly scratched the surface of my own personal examples. Sometimes they are too painful for even me to recall.
But this brings me to my point, you have to be pretty darn tough to pick up the pieces and move on from life’s disruptions mental illness causes. If you suffer from a mental illness, often a chronic disorder, you will have to learn how to live with it your entire life. If someone you love gets diagnosed, you will have to learn how best to support him or her. And the bottom-line is you learn how important it is for life to go on because it does with or without your active participation.
When I reflect back upon my numerous lived experiences with mental illness I think about how I managed to emotionally cope and deal with these major issues often without the help or support of other people. I was expected to accept the situation, cope with it, put on a happy face and move on.
It reminds me of a time when I was working as a sales representative for a Fortune 500 company. I had just received a call in the morning that my mother had been taken to the psychiatric hospital and admitted. I was still relatively young and deeply affected by her hospitalizations. As a matter of fact when I picked up my manager at the airport I was holding back the tears.
We drove a little while in silence, until she finally asked me what was wrong. I debated for a moment but then I told her what had happened to my mother. She looked at me and said, “Well I guess you’ll just have to focus extra hard on selling your products today.” It was like someone had taken a knife and stabbed me in the heart.
I guess all the years of living with mental illness have made me a stronger person. It has also exposed me to the ugliness of stigma. The very idea that people can be so cold and callous about brain disorders and all the situations we have to deal with.
But as I write these words I truly believe the next several years are going to whiled a wealth of information about serious mental illness. I think we will see attitudes begin to change and people will start getting a clue about what we have to deal with on a daily basis.
I hope some people will finally realize how tough you have to be to live with mental illness. I can’t wait for that day to come and I can’t guarantee I won’t tell people “I told you so.”
One of the things I learned in a recovery workshop is to create new dreams after having your life interrupted with a psychiatric illness. I created a dream to become a mental health advocate, but I soon learned that creating a dream is one thing and living it is another.
I think my impatience is a result of having too much time on my hands. Not all days but some days a few hours of free time can feel like sitting in the dentist chair having my teeth pulled. When I am feeling good and overall having a good day I feel like I can accomplish so much more. But on those bad days, like yesterday, I have no desire to do anything.
I wish I had a crystal ball that could tell me when the good days would bless me with their presence. I could be so productive if I had something of value to do. But what kind of job out there rewards people for having outstanding days periodically? There are so few that I have found I need to get creative and figure out a way to utilize my time more wisely.
Yesterday I read an article about a research project that NAMI conducted. It said that people with mental illness had an 80% unemployment rate in the United States. From everything I have read it seems that most other countries fall about in the same statistical ratio. So what does this say about mental illness and employment? The article does not address those of us who may be underemployed, which is an entirely different issue too.
What are we supposed to do when we have those good days? I guess reading and writing is one way to spend time in a valuable manner. I just have to keep from getting too frustrated with myself because I recognize having too much time on my hands is not the best thing for my mental health. I am a goal directed individual and the more goals I can have for myself the better I feel.
The problem comes when I start wishing there was an immediate “feel good” solution for me on those days when I am far more capable of doing complex tasks. These are the times when I focus hard on positive self-talk. It’s really easy to go down the path of “let’s beat up Amy today,” even though I know it is not a healthy thing to do. I may say something like, “If I tried harder I could accomplish more.” “I need to be more organized with my time.” Then I get all excited about having a new plan of action and I wake up the next day and getting out of bed may be the best I can accomplish.
This up and down road makes it a harder to check off the “to-do” list. It also makes it more difficult to have consistent approaches to various goals ultimately making it harder to have achievements. Certainly it is not impossible, just more difficult.
If I had one wish I would hope for more resources to be placed in helping those of us living with a mental illness to have working projects where we could utilize our skill sets. Maybe a collaborative writing project where we contributed to a group writing project. I don’t know the answer. I just know I need something I can feel good about.
Disclosing you have a mental illness is a very tough decision. There are so many issues associated with telling even your friends and family, much less being open about your illness in a public forum, like social media. From my viewpoint if we are to actively change the stigma associated with mental illness it is important for those of us who live with mental illness to feel comfortable in disclosing it.
I recently read an acticle about disclosing your mental illness diagnosis on-line. The author was an advocate, but chooses to blog and advocate anonymously. I have no problem with her choice, but I wonder about the impact you can make as an advocate living anonymously? Isn’t it important to demonstrate that many people living with serious mental illness can recover and contribute to society?
When writing my blog I decided it was important for me to feel comfortable being completely open and honest about who I am. I wanted people to know I was not ashamed for having a mental illness. In fact, I have worked very hard to live my life without living in shame for an illness I did not ask for and believe is no different than a physical illness from that standpoint.
But then I started thinking about all the reasons why people could judge me and look at me differently because I live with bipolar disorder. I thought about the stigma associated with the illness and how people may judge my competency without ever talking to me or reading anything I may write. I began to fall into the trap of worrying about things that I cannot control. I worked through my fears and doubts and moved forward with disclosure in a well thought out way.
For all the reasons why you should never disclose your mental health issues, there are equally a number of reasons why it is a good idea for at least people close to you to know. I was always afraid people would not be my friend if they knew about my condition. The truth is some people didn’t want to be friends with someone who had a mental illness, as if I had some kind of contagious disease. But others seemed to accept it and offer love and support.
After deciding I was going to live my dream and become a Mental Health Advocate, I put a great deal of thought into disclosing my illness. My focus is on raising awareness and creating opportunities to have a dialogue about mental illness so that others may understand. I wanted to jump on the band wagon and help eliminate stigma. I really felt like if people knew I was an Olympic Athlete who was affected by a mental illness they could see that it does not matter what your socio-economic status is or what parade you may have walked in, mental illness can affect anyone. It also helps other people who are suffering with the illness to know someone else who is living with it.
So—for all these reasons I felt like it was a good idea to disclose my illness. I let my Facebook friends know the other day on a status update that I was a Mental Health Advocate, writer and speaker and I lived with Bipolar Disorder. The support I received touched my heart and gave me more strength to keep on walking down the disclosure path.
I can’t tell you what is right for you, but I can say I feel empowered to share my journey. And I am glad I no longer hang my head in fear or shame.
On Monday Anderson Cooper from CNN interviewed Mental Health Advocate and Clinical Psychologist Pat Deegan. Pat, who also lives with schizophrenia, created a “hearing voices” simulator that Anderson experimented with. For 45 minutes one day he wore the IPOD that cranked voices into his ears. As part of the experiment he had to do puzzles and a math quiz while wearing the ear buds. If you are interested you can watch the interview with Anderson Cooper and Pat Deegan on CNN. It was fascinating to hear how much difficulty he had trying to complete tasks and it even affected him while walking down the street.
Since I have experienced a few psychotic episodes as a result of bipolar mania I was really glad to know this simulation existed. It is one thing to try and explain what “hearing voices” is like and another to have someone deal with hearing voices. I hope more people will have access to the simulator; especially people in the media who tend to cover mental illness only when a tragedy occurs.
Even though I want the media to better understand mental illness I still contend that one of the best ways to combat stigma is for those of us who live with a mental illness to continue to speak out about our experiences. Sometimes I forget that I live with and write about mental illness everyday. I have been a student of bipolar illness for the past 30 years. Not necessarily by choice but by necessity. My point is the words and their definitions come relatively easy to me.
Speaking My Truth
About a month ago I was reminded that not everyone knows or understands what a person who lives with bipolar disorder goes through. I was giving an old friend of mine a ride to the airport and he ask me why I wasn’t working in the profession I had been in for 18 years. At first I hesitated and then I decided I was going to speak my truth.
I said, “Well I’m not working in the biotech industry anymore, because when I had a bipolar depressive episode the company I was working for fired me while I was on disability leave.”
Jim replied, “That’s terrible. If you were depressed it must have been more depressing to get fired in the middle of being sick.”
“Yeah it was pretty bad. Right around Christmas time too.”
Jim looked at me and then asked, “What is bipolar disorder anyhow?
“It’s an illness where you experience extreme highs and lows and sometimes psychosis,” I was giving him the shorthand version of the illness.
“Psychosis is when you see or hear things that other people don’t see or hear. Or you may get delusional believing things that are otherwise not true.”
Jim looked at me kind of strangely and then said, “Well sorry for asking so many questions I guess I just don’t understand. I’m really trying to understand.”
I was really pleased he took an interest and was willing to have a dialogue about mental illness. I assured him it was no problem and he could ask me anything he wanted about bipolar disorder.
We rode in an awkward silence for a few minutes and then moved on to a different subject. Even though I admit feeling somewhat anxious I felt really proud of myself for having the courage to be open and honest. I figured the worst that could happen is I would lose a friend, and I already knew how to deal with that.
So I am a big proponent of more people understanding mental illness and especially showing compassion to those of us who live with it everyday. I have always been an Anderson Cooper fan, but now I like him even more. I hope he continues to do more segments on mental illness. The more people talk about it the better chance we all have in breaking down the stigma barriers.
Every now and then I take a walk down memory lane and revisit some of my worst experiences in living with a mental illness. Usually I only do this if I need to retrieve this information for a specific purpose. In the most recent example it was because I was writing my story for Mental Health Talk.
The interesting things I found was that after years of wandering when I actually had the onset of bipolar disorder I realized that I had actually been living with the illness for as long as I could remember. It came out loud and clear when I wrote about my bed ridden depressive episodes and the way I can look at pictures over the years and pin point exactly the times I was suffering with depression. A weight gain here, a weight loss there…my body was showing the physical signs of depression and mania. When I was depressed I always went for more sweets and a lot of them. When I experienced mania I had little to no need to eat anything. The end result was a fluctuation on the scale.
It was like a light bulb went off in my brain. The vicious cycle of untreated bipolar disorder would rear its’ ugly head through isolating symptoms where you just don’t want to socialize or do anything with any friends because you are sick. Sometimes I knew I didn’t feel well and other times I just didn’t have a word or words I could put with what I was experiencing.
The writing has helped me immensely put into words my thoughts and feelings about how I have experienced bipolar disorder. It seems that when I am putting pen to paper I am giving a part of me a voice that has otherwise been silent all these years. In the past I didn’t have enough knowledge about my illness to know that the symptoms I was experiencing in fact were not normal. I guess I thought everyone needed to stay in bed beyond noon to feel well from time to time. I certainly thought most people could stay awake for a day or two and not feel badly! I didn’t know this is what you call mania. How was I supposed to automatically know something was wrong with me?
How do we know if we are struggling with a mental illness? In something fairly obvious like bipolar disorder it helps to have other people in your life that can point out the fact that something is wrong. It also helps to be open minded enough to listen to what they have to say. There have been times when I was in so much denial that even when I was told, “your sick,” I wasn’t going to listen anyhow.
Finally after 13 years of struggling with on again off again medications, I eventually found a treatment regimen that seems to be working well. Of course I am striving for complete symptom resolution and that may not be possible. But I would like to experience a long period of remission, if I can just get to that point I will be elated.
When I was first diagnosed with bipolar disorder the last thing I wanted was to change my life. I wanted to continue with my fast pace lifestyle and highly stressful career. But over the next several years after that initial diagnosis I had to learn about what kinds of limitations I had and how those limits were going to change my life. What I did not realize was that everyone has limitations no matter who they are or what circumstances they have and realizing this fact helped me to adjust to the limitations I had to incur.
Some of the biggest changes were the following:
1) Give up business travel = Change my career
I could no longer travel 3-4 days per week to different cities because traveling was far too intense and interfered with my sleep schedule. It took me years to realize sleep was and is my biggest indicator for wellness. If I wanted to function well I was going to have to protect my sleep patterns and monitor how much sleep I was getting per night. Traveling for business had to stop and that meant a career change.
2) Understand the Disease = Monitor my moods
I had to learn how to monitor my moods. One of the keys to wellness and recovery is to know when you feel well and know when the illness symptoms are breaking through. It seems like it should be obvious to monitor symptoms, but for me it took years to learn the difference between mania, depression and normal moods. The truth is I strive for the most wellness I can have and one step in doing that is stringing lots of good days together by focusing on the things I can control that makes me feel well and eliminating the things that don’t.
3) Discovering Acceptance = Living in the present
Acceptance is about being okay with exactly how things have worked out. I continually strive for acceptance on a daily basis. Sometimes I find myself resisting “what is” and I may get stuck thinking about what life was like before I had to make changes, so I constantly work at acceptance. I have learned acceptance is not a destination it is a state of being.
Life after a mental illness diagnosis meant I had to make some changes in my career, I had to learn about the illness and understand how it affects me and finally I had to experience the stages of acceptance in order to live peacefully with my own destiny. Now I am ready to take on new challenges in my life. What stage are you in with acceptance?