I’m Mentally Ill But Don’t Pity Me

I see you there trying not to stare at me. When I glance at you your eyes quickly dart away. You pass me by and are afraid to say “hello,” out of fear as if what I have may be contagious. When you do make eye contact you search my eyes to see if I am “sane.” You are one of those people who have seen me in my worst moments.

Don’t pity me for life could be so much worse if I lived during the time when the mentally ill were institutionalized. I may have been placed in an ice bath or had a lobotomy. You may have left me restrained for days on end. I could have been deprived of my most basic human needs. In your effort to “treat” me I could have been sprayed with a hose.

You wonder why we fear the mental health system. You wonder why we mistrust and question everything they tell us is good for us. We are vulnerable because we need help, yet often don’t know where to turn.

Don’t pity me for life could be so much worse. We hear the stories about psychiatric institutions closing and we see the remnants of old historic asylums turning into haunted houses. Is there any wonder why? Human suffering cries out from the lonely graves of those who came before us and weathered the storm of archaic psychiatric practices.

Yes the mentally ill have been a persecuted group for hundreds of years. But things have gotten better—haven’t they?

Don’t pity me for life could be so much worse. It’s hard to look at me now that I am mentally ill. I’m not welcome in your group anymore. I don’t fit with your perfect lives for mine is rather messy. But with these words I write I have a voice, I have a chance to make a difference.

Don’t pity me for life could be so much worse. Yet you look at me with such disgust and use my illness to make jokes. I am a human being who happened to inherit a mental illness. Yet I refuse to sit quietly in my chair.

I want you to stand up for me and fight for better treatment. I want you to hold my hand and walk with me in my journey for a good life. I want you to understand my pain and suffering, but take note of me as a survivor. I am not a mere shadow from the past; I am not someone you can just push aside.

Don’t pity me for life could be so much worse. If you don’t do anything just say a little prayer. I am here to fight for a better tomorrow and I am not going away.

Don’t pity me because I believe life can be so much better.

 

When the good day arrives!

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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.

Living with Mental Illness

Struggle

When I entered the world of living with bipolar disorder it took me many years to learn about the illness. Sometimes the descriptions of the symptoms I would read about would not apply to me, so I never could really get a handle on how the illness was alive and well inside of my brain. I had a hard time determining how bipolar disorder was affecting my day-to-day living. Until it became so debilitating that it was hard to ignore the obvious.

This is the thing about mental illness—it is complex to diagnosis, difficult to live with, and hard to explain to other people who have no idea what it is like to live in the world when you struggle with a mental illness.

But some of us have a need and desire to educate the general population about various disorders. Yet we are sometimes afraid to talk about our mental illness for fear we will be discriminated against or thought less of because we live with these disorders. Wow! Is it any wonder that many of us live in isolation after we become ill?  It’s just not fair.

I don’t know a great deal about other mental illnesses but I do know a fair amount about bipolar disorder. I have numerous experiences on both sides of the fence, as a caregiver and as a person who lives with the illness. I know enough to have gained a tremendous amount of respect for this mysterious illness that impacts my brain. It can bring me to my knees with emotional pain with a depressive episode or it can make me so manic I can’t sit still. Whatever end of the spectrum I am fighting I am always on the lookout for the next major episode. I don’t get a chance to relax and chalk up my limited amount of sleep to “too many things on my mind.” Instead I have to monitor myself and ask the question, “Am I getting manic again? Should I call my doctor?”

In between my hypervigilance I try to live a “normal” life. I take care of my new adopted puppy, cut the grass, go to the grocery store and work a part-time job.

I’m looking forward to an upcoming trip to Washington, D.C. where I will attend the National Alliance for Mental Illness (NAMI) national conference.  When I go there I am planning on joining other members in a National Action Day.  This is where we will go to Capitol Hill and tell our story to our congressional members and ask them to support mental health services. It is an opportunity to share in two minutes what has affected me my entire life. I hope I can articulate what it’s like to have a mental illness disrupt your life. Then I want to explain how with proper treatment and a lot of hard work how some of us can and do recover.

We never get “cured” but we go on and live our lives in spite of the enormous challenges we have been given. We move on and learn to live our lives in the world of mental illness. It’s not always full of pain and sorrow.  Sometimes it simply becomes the “way it just is.”  I think you just get used to the struggle.

 

 

 

 

The Strengths Recovery Path – Part 2

“Sometimes psychiatric problems take over our life. Everything about our life can come to reflect our psychiatric history. We may feel like a psychiatric diagnosis spells the end of our chances for experiencing love, fun, or success. We can feel trapped in a life that is very limited and become bored, depressed and end up with negative feelings about ourselves1.”

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When I read this quote I said, “Yes, absolutely true for me.” It is very difficult to pick yourself back up after having your life completely interrupted by a mental illness. But once you have received treatment the next step is to work on putting your life back together again. I know this is what I had to do. And it is hard work, but so worth it when life starts to unfold its’ many surprises.

This is why I am a huge advocate for recovery programs. Putting energy into healing and mapping out a future is so critically important in this process.

The first step in recovery is having are basic needs met.  Such as, housing, food, and clothing.  After those basic needs are met what we want to focus on is answering the questions, “How do I have a fulfilled life in spite of my psychiatric disability, a.k.a. mental illness?” We want answers to questions about “What’s next for me? What can I do for a career? How can I still be a good parent, wife, husband, partner, friend?”  What are some ways I can contribute to my community?

Often times I found myself searching for answers to those questions outside of me.  I seemed to have lost so much confidence and my self-esteem suffered enormously. I frequently doubted my ability to be anything more than a “mentally ill patient.” Getting sick knocked me so far down that I only saw myself as weak and damaged. This is why I sought validation of my self-worth outside of me.  But I quickly learned I was going to have to restore my inner confidence while I worked to create new dreams and goals for my life.

One of the things that helped me in the Recovery Program was developing a vision for my life. Stepping back and creating new dreams and outlining the long-term and short-term goals that were going to help me get there. Part of my vision was to become a Mental Health Advocate, specifically focusing on raising education and awareness. I have begun to live that dream and the more I walk down that path the better I feel.

But if I am honest I would tell you that I wrote that vision four years ago. It has taken longer than I expected to get to living my dream, but that’s because I had some setbacks along the way. The good news is I never forgot my vision. This is why it is so important to create a vision or have a dream. When you create it you can work within your limitations, not viewing them as obstacles, but viewing them as a hurdle.  Hurdles were meant to be jumped over!

The most important thing to realize if you or a loved one has a psychiatric disability is that there are many things that can still be accomplished. You just have to find the right path.

 

1”Pathways to Recovery: A Strengths Recovery Self-Help Workbook.” University of Kansas School of Social Welfare, 2002. Page 127.

The Strengths Recovery Path-Part 1

JTR-textYears ago I went through a 12 week course called the “Pathways to Recovery.”  The local chapter of the Depression Bipolar Support Alliance (DBSA) sponsored it.

At first I was very skeptical about the workshop. I thought, “What am I going to learn that’s going to help me?” After suffering from a very long major depressive episode, I knew I needed an extra boost to get me up and moving again.

So I enrolled in the program and received this fantastic workbook called “Pathways to Recovery: A Strengths Recovery Self-Help Workbook.” It is filled with a wealth of information. One of the things I like is one definition of recovery as listed below:

“Recovery is a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It’s a way of living a satisfying, hopeful, and contributing life even within the limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”

~William Anthony, Director, Center for Psychiatric Rehabilitation, Boston University

I liked this definition because it seemed to hit on all the areas that I know has been touched in my own journey of recovery. Many times I have struggled to pick myself back up after having setbacks and I have turned to this workbook for information. I have sat down and made new goals for myself, in light of the fact I could now face my limitations with a different attitude.

In my view I think that is one of the keys in recovery. The honest look into your current situation that says, “I am not the person I used to be, but I still have a great deal to offer. I can make new dreams and goals.”

In the course we spent a significant amount of time identifying our strengths. As a matter of fact, an entire chapter was devoted to help you point out and identify your strengths. The book suggests that we usually have a tendency to pay attention to our problems, personal deficits and weaknesses more than we actually pay attention to what we are good at.

If you want to take a stab at seeing how many strengths you can identify try taking a piece of paper and write down what you think are your strengths. It’s kind of fun. What I realized is that I had about three things I wrote down. They ask the question of whether you found it hard or not. “Yes,” was my answer.

I took a quote from the strengths chapter that highlights something I believe is true:

“If you constantly think of illness, you eventually become ill; if you believe yourself to be beautiful, you become so.” ~Shakti Gawain

The workbook encourages you to move from a problem orientation to a strengths orientation. Here are a couple of examples:

Problem Orientation: Instead of focusing on my problems, symptoms and deficits…Strengths Orientation: I am primarily concerned with what I want, desire, and dream of.

Problem Orientation: Rather than see myself as my diagnostic label…Strengths Orientation: I see myself as a unique human being, with a strong mind, body and spirit.

The whole idea of changing our attitude and focusing on the solution instead of on the problem begins to shift our minds. It is a great way to move from getting down to looking for the “good” things about us. Because everyone on this journey of recovery knows you have to learn how to be kind to yourself and focus on the positive aspects so you can overcome the challenges.

 

 

 

 

 

 

 

Mental Illness and Surviving the Memory Tides

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I think it’s fair to say those of us with mental illness “suffer.” We often experience pain and loss that is incredibly intense and cannot be put into enough words to describe how it actually feels. The cruel thing is we not only suffer with an illness we also suffer when we move along the process in recovery. Additionally, we are usually expected to suffer in silence because no one else can see our illness in x-rays or test results. They just don’t understand what they cannot see.

It has taken me a long time to understand the trials and tribulations of my own struggles with bipolar disorder. Sometimes I feel like I have been sitting in the middle of the ocean and for some reason I survived the “memory tides.” The memory tides hit you with high tides and you nearly drown in snapshots of your mental health journey. Then, for some unknown reason low tide hits and you get bits and pieces of the past without getting knocked over.

There have been times in my own healing process where I have literally gone back to bed because I have been knocked over by such intense memories it wore me out. I would just lie there in bed and let my mind take me wherever it needed to go. In the moment, I recognized I was processing the past and for some reason it was a necessary evil that I had to experience.

I have read that hospitalizations can be traumatizing. Depending on what happened in my hospital stay I would have to agree with that, even though I believe if you need hospitalization it is a safe place to go. But I can say that in my memory tides I have viewed my hospital stays in photographic frames. Play by play I see the faces of the doctors and nurses who cared for me.

Sometimes the memories are so intense I can recall the not so nice things and good things a healthcare provider may have said to me.   But worse than what people said is what they did when I was experiencing a psychotic episode. I have seen the paint peeled walls of seclusion rooms and felt the tight leather restraints around my wrist and ankles. I have had to learn how to cope with the pain of those memories as well.

More than 15 years ago, I was in a small community hospital and  was left in restraints for 16 hours. I was asleep almost the entire time, only waking up to realize I was tied to a bed. They finally let me up when I needed to use the restroom. I felt mistreated in that situation and it took me a long time to heal from it.

So when people say the word “suffer” to me I really get what that means. These experiences drive me to advocate for mental illness, because I don’t want other people to suffer as much or more than I did. In the meantime when the memory tides come I just sit back and brace myself for what I am about to see. Everyday gets better and one day I hope to replace those pictures with something much more pleasant.
 

 

Mental Illness Recovery

The “Recovery Movement” in mental health has been around for several years. I have read different opinions about recovery and I think it’s important to understand what recovery actually means.

A Recovery Definition

According to the National Alliance for Mental Illness recovery is a process that includes having an initial diagnosis, learning about your illness and the treatments available, sharing information about your illness with friends and family and finally doing something to help other people with your illness. Nowhere in this definition of recovery does it talk about resuming your life where you left off before your diagnosis.

Before I read this explanation from NAMI I really thought recovery meant I could pick back up with my life as I once knew it. But realistically I had to learn that I had to accept the fact that I now had limitations I had to consider. I have heard the argument that everyone has limitations and while I agree with this I am coming from the standpoint of when you get sick and because of whatever illness you have, your life as you once knew it has changed. It has become a “life interrupted” by mental illness.

Severe Mental Illness

I will be the first one to admit I love it when I read success stories about people with bipolar disorder, schizophrenia, depression, post traumatic stress disorder or anxiety disorder (classified as severe mental illness) who are living examples of people who have been able to get out and work full time jobs. They have either gone back to work or have changed careers. I get excited thinking about the possibilities for my own life.

Overcoming Obstacles

At the same time, I have to be honest and tell you that we have tremendous hurdles in getting to this endpoint. Our disorders may go into remission but often times we still have to continue taking medications, going to the doctor and/or therapy visits, and closely monitoring our symptoms. So the most important point is that recovery in no shape or form means “healed.”   If anything it means people who have learned how to overcome many obstacles and lead a healthy, happy and productive life. I think people who are living with mental disorders have a strong inner strength. Part of recovery is being able to recognize those key strengths and use them to our advantage.

I am glad there is a recovery movement in mental health. I like the idea that younger people can be given a sense of hope that the proper treatment can help them go on to achieve their goals. But I also think it has to be tempered by the fact that severe mental illness is really difficult to manage and if you are managing it well you are a superstar in my book!

Striving for Remission

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.

 

 

Learning to grieve the losses from Mental Illness

For several months I found myself searching the Internet for topics relating to “mental illness and losses.” I was not exactly sure what was going on but after several weeks I realized I was in a grieving process with regard to having my life change from bipolar disorder. I was looking for some other stories out there about people who had been through major life changes because of their mental illness. I wanted to know how the illness had impacted them and what they did to deal with those losses.

I found a lot of general information about how mental illness can affect your job, relationships and your economic status. I also found several people on the Depression Bipolar Support Alliance site who had recovered and were working again in various careers. “But what about people like me?” I thought. Where are the people who are grieving the loss of careers and relationships? What did they do to recover? How did they do it?

After several searches I found a YouTube video of a presentation by Dr. Ken Druck. He was presenting for the International Bipolar Foundation. The talk was about grief and losses pertaining to the caretakers of bipolar disorder folks. But as I listened I realized I could relate to various things.

I learned grief, while certainly painful, is a very healthy response to loss of any kind. This can even include the loss of dreams you might be striving for. In my case I was grieving for loss of my life, as I once knew it, which included lots of great relationships and an awesome career. I kept listening very intently and found that even though there is the well-known Kuebler Ross grief process, grieving in and of itself is not linear. And eventually we can heal.

The best part about the video is that I actually had the acknowledgement I had been looking for; it is perfectly “normal” to grieve the losses from mental illness. At last I found a voice out there that resonated with me. Now I could start taking action to help myself heal.

I believe whole heartily in recovering from mental illness, but I also know when things get tough and symptoms break through the road is much more difficult than it seems. Grief can be a trigger for depression so that makes it much more difficult to process when you have bipolar disorder or major depressive disorder. This is one of the reasons why finding the information on the YouTube video was so helpful for me. It gave me a sense of relief knowing that what I was experiencing actually had a name and now I could understand why I was searching for information to help relieve some of my pain.

If you have experienced losses because of a mental illness you might want to check out the video “Bipolar Lecture by Ken Druck.” (This is the link http://www.youtube.com/watch?v=6XBbDnb1z3w). I also bought Dr. Druck’s book and have been reading it. It’s called “The Real Rules of Life” and deals with several topics related to understanding and dealing with “what is.” I found it very helpful.

 

Shattered No More & Living with Mental Illness

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It was as if I had been running this ultra marathon and was down to my last mile; I still couldn’t see the finish line but I knew it was coming.  I knew relief was just around the corner and I knew when I crossed that finish line I was going to feel ecstatic.  I’m talking about my journey to recovery from bipolar disorder, a long, arduous grueling recovery process where blood, sweat and tears would have surpassed that of my fictitious ultra marathon example.

It was nearly four years ago when I signed up for the Pathways to Recovery: A Strengths Recovery Workshop.  I was handed a really nice gigantic self-help workbook and several extra inserts.  The book alone has several hundred pages of interactive guides.  It is a place to write down real live examples of how one is going to recovery from a mental illness.  Everything from writing a vision statement for what your dreams are to identifying short and long-term goals for how you are going to reach that vision.

The problem of course is that writing is one thing and doing is another.  The other problem is continually managing an illness while you are trying to recover.  I think that’s an oxymoron.  Exactly how do you recover while you are still managing symptoms?  Doesn’t the word recovery mean, “healed?”  Well that’s exactly what it does not mean, because there are no “cures” for mental illness.  There are medications and remedies that treat the symptoms but not cure the disease.  So the very nature of recovery is geared toward managing the symptoms and getting them to such a point where you can begin to rebuild your life.  The hope is that symptoms will not interfere with being able to do other things, but if they do interfere then we have the support systems in place to be able to handle them.

Everyone has her own definition of what “recovery” is.  I think of it as being able to reclaim a positive sense of self despite having a mental illness.  I look at recovery as a journey where finding healthy outlets become the “norm” and dealing with my mental illness is just part of my day but does not ruin my day.  I have always expected to recover and that’s probably a large part of why I have been able too.  But it does not mean that I don’t have bad days or difficult days where the medication side effects bother me to the point where sometimes I have to sleep 12 hours a day just to be able to function.  It used to bother me but I came to realize that if this is how I need to manage the illness this is what I have to do.

For a long time I did feel shattered because I had a mental illness.  But now I feel as if it is just part of who I am and what card I’ve been dealt in life.  We don’t get to choose what illness we get and what we don’t get but we do get to choose how we are going to deal with it.