Talk About Mental Illness

Speaking out about mental illness is a very empowering journey. I started blogging because I wanted to do something to help us move along the stigma curve. I really felt like if those of us who had a mental illness and started talking more about it, openly and honestly it would help others begin to understand a little more.

When you go through pain, struggle and adversity the natural course is wanting to share that experience so others may not have to suffer as much. By sharing you also release a pressure valve that comes from holding in a troubling experience. If you never hear about people who have been through what you have experienced the fear gage continues to go up. You don’t know what to expect and all we generally think about is the worst case scenario.

Years ago when I first encountered the mental health system I was 19 years old. My mother came into the system in a crises situation and I was called upon to help her get the treatment she needed at a psychiatric hospital. I do remember talking about my experience to other people, but I don’t think they knew what to say to me to provide any comfort. I think they listened and then wanted to move on with their day. Over the years I often wandered if people would have been more understanding if she had cancer. It seems with a mental illness people in general have less compassion and tend to blame the victim.

What I learned from that experience was that it was not ok for me to talk about what happened to my mother. I wasn’t going to find any compassionate understanding because most people didn’t know what the words meant I was talking about anyhow. They didn’t understand that bipolar disorder could be a life threatening illness for any number of reasons. The sad thing about the whole thing is I don’t think much has changed in 30 years. But I have changed and I expect to be able to talk about mental illness without worrying about what people think.

I would hate for anyone young or old to have to go through that experience. It caused a great deal of pain and suffering and a sense of loss that I went through. But the loss was temporary, thank God. My mother got well, returned to work and continued to live her life even with the struggles of bipolar disorder. It took many episodes and a few trips to the hospital for her to get stabilized. But she did and knowing that is possible changed how I looked at bipolar disorder.

If only we had known sooner that you have to fight for the proper treatment. You have to take on bipolar disorder with a plan of action. You cannot let the illness “run its course” because the course can be so dangerous. You would not let cancer “run its course.” These illnesses are not like having a case of the flu. They are serious and they deserve major attention from survivors and caregivers of all types.

The more we talk about mental illness the better the outcome will be for everyone.   I hope the next 30 years will bring about significant change and I hope by writing about it I will help move the pendulum.

 

My Amazing Doggies – Part 1

This is part of the Writing 101 Challenge.  Today’s challenge is to write about losses in our life and to do this in a series.  Mine is about My Amazing Doggies.

At the end of a long road in my own journey of mental health recovery I had three best friends who went the distance—Chance, Shasta and Buddy. They were my four legged friends who never once complained about where we lived or what job I had. There has been no other friend in my life like my dogs who offered unconditional love no matter the circumstances. Each one of them deserved an award for being exceptional “service dogs,” even though technically they weren’t working dogs.

But like people dogs don’t live forever. I wish they did but that’s not how it is.   My black lab, Chance, was rescued in 1993 at a crowded animal shelter in Las Vegas, Nevada. She was special from the moment she layed her head on my hand through the gap in the fence. Her big brown eyes and very distinctive yelping bark always letting me know when she wanted something.

Chance and I covered lots of ground in the hot and dry Nevada desert. We hiked the gorgeous mountains and ran in the vacant land. I would take her leash off and she would run free chasing lizards and jack rabbits from one place to the next. She had great balance and would ride the jet ski with me at Apache Lake outside of Phoenix. I can still picture her with her ears flying back, giving me the doggie smile!

I remember the first time I put her on a plane to fly cross-country to my hometown near Pittsburgh, Pennsylvania. When she got off that plane and out of her crate she looked at me like I had better never do that again. If she could have talked she would have given me her best version of a cussing sailor.

One time my partner’s mother was visiting. She had made a lemon cake with icing and left it on the counter top. We all left to have dinner and Chance stayed at home. When we came home the entire cake in its’ pan was in the middle of the floor with only one big bite out of the middle. The joke always was, “Even Chance didn’t like the cake!”

For 17 years I was blessed to have a wonderful hiking partner, a travel buddy and a dinner companion. She was the most amazing dog I have ever had. She knew when I was depressed and would cuddle up beside me or lay her head on my feet. When no one was around to provide me comfort, Chance was always there.

By the time I had to say goodbye every person who had crossed my path had known Chance. She was ingrained in every fabric of my life. I was devastated when Chance went to Doggie heaven, so much that it triggered a depressive episode. Her big brown eyes and distinctive bark were gone and I was left with an overwhelming amount of mixed emotions—grateful for the wonderful memories and deeply saddened by the loss.

I have several beautiful pictures of Chance and they are by far not like having her by my side, but they make me smile knowing I was blessed to have such a wonderful gift for so many years.

Consumed with a Mental Illness Diagnosis

Sometimes dealing with mental illness can be completely overwhelming and all consuming. This happens in bipolar disorder when symptoms break through or there is some kind of relapse causing either a manic or depressive episode and in some cases both at the same time. But in other times when the illness is relatively stable it becomes really important to focus on other things beside your diagnosis.

Recently I had to remind myself that I had more experiences than simply my visits to the psychiatric hospital. During one of my depressive episodes I didn’t even feel good about my Olympic experience. Someone ask me about it and I just kind of shrugged my shoulders like it really didn’t matter anyhow. This is what can happen when we get so bogged down in dealing with recurring symptoms and managing a disease. It takes a toll on the balancing aspect of life and becomes a central focus of our lives.

As I began to remind myself about the good things that I had experienced or the things I considered accomplishments I had to balance those thoughts without allowing myself to get sad because I didn’t feel like the person I used to be. It was like thought dominos falling from one good example to “why did I have to get this illness?” It was a fight that I eventually won and came out on the positive side of things.

But it is really easy to see how people who suffer from mental illness can become so into their own thoughts that it actually makes the conditions worse. When we are to inside ourselves without some kind of external stimulus we begin to believe all the things we tell ourselves. We need to remind ourselves always that we are more than our illness, more than a diagnosis and certainly not a label.

As I took a look back and identified things I was really proud of, I highlighted my Olympic experience as being something that I would always cherish. No amount of mental illness drama was ever going to take away my positive feelings about marching in those opening ceremonies, with all the world watching. For a moment in time I was a part of something much bigger than myself and I had to remind myself that this experience still mattered regardless of how my life had twisted and turned.

I also started looking at other people who I thought were good examples of how to live with adversity. I began to think about one of my old college basketball coaches from the University of Tennessee, Pat Summitt. A few years ago she was diagnosed with Alzheimer’s disease. Instead of drifting into despair she took action and created an organization with a mission to help fund Alzheimer’s disease research. If Pat wasn’t going to give up how could I? My illness was far less severe than Alzheimer’s. “There must be something I can do to make a difference in the world of mental illness,” I thought to myself.

I made myself start focusing on the whole picture of “Amy,” and stopped viewing myself as a broken down version of a picture perfect past. The ruminating began to stop and I started to gain better self-esteem and more confidence. I could tell by the way I walked and the way I talked I was getting better everyday. Essentially I put myself in training to “get outside” my own head.

All these things in combination with reading other people’s stories have really helped me out of a dark abyss. There are few things that are worse than suffering from continual depressive symptoms that are debilitating, but I knew I needed to put myself in a position where I could focus on the things I could control and let go of the things I could not.

I won that battle by insisting my doctor put me on a medication that had some evidence of working in depression. I also advocated for removing a medication that was causing severe side effects. These are the things I could control. And for my part I became focused on understanding the psychological aspects of grieving from mental illness losses. In short, I made a plan and I stuck with it.

Getting better has allowed me to lift up my head and recognize I don’t have to think of myself as “lesser.” Just because I can’t say I work at a big Fortune 500 company anymore I’m not any lesser of a human being. I have those experiences, yes, but even that does not make me any better or worse off than anyone who does not.

The next time you can’t stop thinking about your diagnosis try getting outside your own head and think about “you” the whole person and not just the person with a label. It might make a small difference in your day.

Mental Disorders Facts and Statistics

I wanted to share some interesting facts and statistics from the National Institute of Mental Health. If you click on the link it will take you to the actual site where additional information can be found.

Did you know……

  • Eating disorders have the highest rate of mortality of any psychiatric disorder

o   Go to the NIMH home page and under the tab “New at NIMH” you’ll find the twitter chat link about Eating Disorders.

Anxiety disorders including Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Obsessive Compulsive Disorder and Social Anxiety Disorder collectively are the most common mental disorders for Americans

o   http://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml#part7

Attention deficit hyperactivity disorder is one of the most common childhood disorders and can continue into adulthood

o   NIMH ADHD Information

Bipolar disorder effects 2.6% of the U.S. population. Of this amount 82.9% is classified as “severe”

o   NIMH Bipolar Disorder Statistics

Borderline Personality Disorder effects 1.6% of the U.S. adult population

o   NIMH Borderline Personality Disorder Statistics

Depression effects 6.7% of the U.S. adult population

o   NIMH Depression Statistics

Schizophrenia effects 1.1% of the U.S. adult population

o   NIMH Schizophrenia Statistics

The Language of Mental Illness

When you finally get diagnosed with a mental illness (I say finally because it often takes a long time before people receive a proper diagnosis) you enter into a world with an entirely different language. If I did not know anything about mental illness I would be relieved to know I could do a “Google” search and try to figure out where I should start looking for reliable information about my diagnosis and the accompanying symptoms.

In 1984 my mother was diagnosed with manic-depressive disorder (now called bipolar disorder) during a crises situation and there was no such thing as the Internet to turn too look up words like psychosis. I had to physically go to the library so I could begin to understand what the doctors were talking about. I was only 19 years old at the time and I was scarred to death of leaving my mother in the hospital thinking it would be like “One Flew Over the Cuckoo’s Nest.” The scene that kept replaying in my mind was the psychiatric patient on the ward who was starring off into space without any connection to reality. “Was this going to happen to my mother?” I thought. The doctor did not take my hand and say, “It’s going to be alright. I understand you are afraid.” Instead he told me to pull myself together and convince my mother to sign voluntary commitment papers. “What is that for?” I ask the doctor and he replied, “To keep her from going to the state mental institution.” I don’t think it ever entered his mind that I had no idea what all these words meant nor the implications behind them.

Even with the best access to resources today it is still very difficult to understand some of these definitions. We are given a “label” and that is often a relief, but then what? Do we automatically understand the signs and symptoms of our diagnosis? Do we have a good handle on what it will take to get well again? Do we even know if we are capable of getting well? What did the doctor explain to us when he or she gave us the diagnosis? Did they point us in the direction for more resources or hand us a patient education brochure?

Often times the answer to those questions become each individuals’ journey on the mental health road to healing and/or hell depending on how you look at it. In my experience it takes a very long time, even years, to grasp the complicated nature of bipolar disorder. Many times it is only with a retrospective look back into the past where we can start identifying specific behavior and patterns that we now understand as being part of a manic or depressive episode. We might not know that the negative self-talk we hear often stems from a depressive episode. It might be hidden as “seeing the glass half-full” when really the glass isn’t even involved in our thought process instead it’s the depression doing the talking.

A lot of times I have heard people say that I liked the “manic” highs and therefore that is why I didn’t take my medication as prescribed. For some people that may be true, but for me I didn’t even understand what my manic high looked like, let alone try to have more of it. It took me years to realize and identify how to recognize the difference between mania and feeling good. After years of suffering with an undertreated condition I had to learn when my mood was actually normal. When I understood “normal,” I could find relief knowing that I wasn’t on the verge of another dangerous episode.

After sitting here for a moment I realized that even reading this blog one would have to have a basic understanding of mental illness or a willingness to learn about the subject. But even my choice of words indicates I have been using the language for quite a while. I am familiar with much of the mental health vernacular.

In my research I have found an interesting statistic. Did you know it often takes the average bipolar patient 10 years to find the proper treatment and that is after a diagnosis? For some people how can you tell the difference between manic grandiosity and arrogance? How easy is it to blame continual crying jags on losing your job? The fine line between normal reactions to external stimuli and those that are not normal behaviors or actions becomes increasingly cloudy when you are trying to decipher what exactly is “normal,” and how do these disease descriptors apply to me or someone I love?

We are more fortunate today that we do have the Internet for researching information and finding a wealth of knowledge about our diagnosis. The key is learning to look at credible sources and recognizing that it takes more than a definition to understand complex disorders. It truly is a language all to its own and one that needs time and patience to learn and comprehend.

A Day Without Mental Illness Stigma

What would it mean to have a society where mental illness has no stigma? First of all it would mean equality. Years ago when I took disability leave for a severe bout of bipolar depression the company I was working for took it upon themselves to fire me while I was on leave. Would I have been fired if I was out for cancer treatments? Maybe, but it would have been perceived as being very cold-hearted. It’s almost acceptable to fire someone who goes on leave for a mental illness. Who expects us to recover and live healthy, happy and productive lives?

Losing my job a week before Christmas and in the middle of a major depressive episode, my state of mind became even worse. It was as if I could not get a break anywhere I turned. I don’t know why they really fired me, but the evidence pointed to the fact I had written an untimely email and copied the CEO telling them I was suffering from a bipolar disorder episode. In my “right” mind I would have never written the letter, let alone sent it to the CEO! But I didn’t get any leeway even though they knew I was suffering with a mental illness. I had been in the business for 16 years and had a very successful career, except the last six years had been really hard because of my mental health state.   If I could have taken the time off I needed to get well and not have felt any repercussions from it I may have been able to continue working in the field I developed an expertise in. But this is not how things turned out for me. Stigma impacted my ability to stay gainfully employed.

When something like losing a job because of your illness happens it’s really easy to blame yourself for having a mental illness. We are already taught that we are “less than others” because of our conditions. Very often we are left off in the emergency room for treatment and don’t see a loved one again for several days. Going to the psych ward is perceived as an embarrassment and an experience not too many want to talk about with others. The stigma of mental illness effects whether or not people get treatment, because the very treatment we seek is entrenched with stigma factors.

Having no stigma would mean some people would not be able to make jokes about people who were suffering who were “crazy.” It would mean we would take care of those who had mental illness in a compassionate way with enough resources available so people could get the treatment they needed.

In a world without stigma those of us who are unlucky enough to have a mental illness would have no self-stigma. We would not feel guilty about being sick. We could work on getting the right treatment without the many fears that accompany self-stigma. Accepting our condition would be easier and looking for solutions would be our focus, instead of spending so much time going through fierce denial. Getting a proper diagnosis would be a relief instead of a “sentence.”

No stigma would mean we could keep our friends who would have a general understanding about what we were going through. They would not be afraid to interact with us and would look at us with the same respect they once had before we were diagnosed. The dynamics of relationships would not change to the extent that our friends no longer wanted to interact with someone who had a mental illness. We wouldn’t feel as if we had a plague and people wanted to distance themselves from us.

In a world without stigma the general population would understand mental illness was not just a disease of the poor or homeless. They would know mental illness can affect every socio-economic class regardless of education or income level.

Finally, a world without stigma would mean greater research dollars would be allocated to find cures and better treatment. We would not have to gain 60 pounds with medication trial and error. We could take medications without feeling like a “zombie” and continue on with our daily lives. Symptom free would be the expectation not a far off hope. Knowing the treatments would work would give us all a greater sense of relief and confidence to move on with the rest of our lives.

I hope I’ll see the day when the stigma surrounding mental illness is something we talk about from a historical perspective and when we do we all shudder to think this is how we treated a large percentage of our population who suffered with these illnesses. Society will one day be ashamed at how they acted. One day the days of mental illness stigma will only be a memory.

 

 

Social Isolation and Maintaining Friends

I have found one of the most difficult aspects of having a mental illness is the challenge in maintaining friendships. It is not that I stopped caring about other people—it is really because I got sick and was unable to maintain contact with people. It left me in a tough position with a whole bunch of connections yet few I had spoken to in years.

One could argue that people could have contacted me and that is true except my many manic episodes prompted me to change my phone number several times. Even if someone wanted to get in touch with me there’s a good chance they would not know my numbers.

I think that’s the good thing about social media. You can stay in touch as long as you don’t delete your Facebook page, Twitter account, or LinkedIn profile. Unfortunately, I’ve done that a couple of times too. But I have managed to keep most of my connections and this gives me the opportunity to keep up with old friends. It’s not like a good ole’ fashion phone conversation, but at least you know someone is thinking about you when they read your Facebook status and respond with a “like” or a “comment.”

One of the biggest problems with having a mental illness is the social isolation that comes from dealing with debilitating symptoms, like not being able to get out of bed. It could also be that you had an episode and ended up being hospitalized for a few weeks, which also equates to “falling off the face of the earth.” You just kind of disappear for a while until you get well enough to interact again. If people don’t know you’ve been sick or have an illness they wonder what happened to the friendship.

I had a friend who even knew I had bipolar disorder, but didn’t know I had been sick. He simply started thinking I didn’t value his friendship, which was not the truth. I’d gotten sick and there was know way he could know that until I was well enough to tell him. By then so much time had passed the friendship will never be the same again.

Friendships are hard to maintain even without a mental illness. Having one makes maintaining relationships a bit more challenging. I find myself more comfortable being open and honest with people and just letting them know I have bipolar disorder. Not to use it as an excuse but to let them know I might not always be well. I hope my friends understand and if they don’t I’ll have to deal with it.

There are times when I wish I could reach out and talk to someone from my past and explain to him or her why I stopped contacting them. The truth is to many years have passed and I am not sure I can overcome that amount of lost time. Instead I’ll keep focusing on the interaction I do have with social media and look forward to meeting new friends in the future. Hopefully I can stay healthy and not become so socially isolated.