The Bipolar Disorder Canyon

It seems like yesterday when I hiked the Grand Canyon, but in reality it has been many years ago.  Much time has passed and most of the last 15 years I have spent battling a mental illness.  It has consumed my energy, stolen away many of my dreams, and kept me from doing the things I love to do.

But somewhere deep inside of me I have tapped into the fighting spirit, the very same spirit that led me to hike that beautiful canyon and strive relentlessly back to the top of the mountain.

The Grand Canyon hike is very opposite of a typical hike up a mountain and then back down again.  When you set off to hike the Canyon, you start at the top and descend down 13 miles to the bottom.  While it seems only physically challenging to go up, it is equally difficult to pound down the winding trail to the bold and rushing waters of the Colorado River.

I think hiking is a great deal like living with a mental illness.  When bipolar disorder started to get worse, I descended rapidly into an emotional abyss.  By the time I got to the bottom of understanding bipolar disorder, I had to climb a long way to get my life back again.

There were days when I really did not think I was going to make it.  The challenges were so steep that I wondered if I could overcome the odds and beat my illness.  Winning is something I stumbled upon with every step I took to recover.  I count the small wins, like learning to manage my symptoms and understanding how bipolar disorder affected me.  The large wins were finding a good doctor and searching to find the right combination of medications.

On a long hike a blister that forms is terribly painful and makes it more difficult to continue walking.  Living with bipolar disorder rubs a lot of blisters all over the body.  It is only when those blisters heal that the pain goes away.  Sometimes it takes years for that to happen.

Learning to cope with all the unexpected challenges in life is what makes it all very interesting.  When you are in the desert hiking at over 100 degrees the very intensity of the heat can leave you exhausted.  When it comes to mental illness, equally challenging is dealing with those external factors like stigma, that can drag a person down and keep her in silent suffering for years.  Not being aware of those feelings of shame, blame, guilt and feeling “less than,” strips a person of much needed energy to make the journey.

What do you do when you are facing a steep climb?

What works for me is putting my head down and taking one small step at a time.  Sure, it gets frustrating and at times I can honestly say I have wanted to give up.  But the hopeful promise of reaching the goal I set out to accomplish keeps me in the game.  The blisters have healed and the walk is much more enjoyable.

I have no plans to descend down a mountain that I cannot walk back up again.  I might take a few steps down every now and then, but I really focus on enjoying the view right from where I am standing.

I pray I never need the amount of perseverance or energy that it took to climb my way out of the bipolar canyon.  It’s always going to be there, but I have learned to respect it and cope with what challenges it has caused me.

Disclosing a Mental Illness

shhh-its-a-secret

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.

Take the Stigma Poll

 

I am not a failure, am I?

Sometimes I Feel Like A Failure

Does having a mental illness make you feel like a failure? As much as I know I am far from a failure I still have my moments when I look at former colleagues and think, “What the heck happened to me?” Of course I know exactly what happened—mental illness dropped on my doorstep and interrupted my life, as I once knew it, but sometimes I have to remind myself of this fact.

Believing we are failures because we have a mental illness is really part of self-stigma. It’s fits right under the category of blaming ourselves for having an illness. I suppose it is in part a way to try and make some sense out of various behaviors and in an effort to take back some control over the situation we point our fingers at the person looking back at us in the mirror.

Self-Stigma: Shame & Blame

In times when I am suffering with a depressive episode I shame myself into believing it’s my fault, as if I really have any control over the illness. The shame makes the situation far worse and really adds to the bad feelings I already have about myself. I made a point to stop the shaming the last time I was sick. It’s already hard enough as it is to get well again but I learned I needed to be a better friend to myself.

Why Can’t I Be “Normal?”

If only I was normal I wouldn’t have to deal with all these things. Mental illness can take you out of mainstream society. It can interrupt your life with hospitalizations, frequent doctor visits, therapy, medication side effects, loss of work and all these things can cause a withdrawal from life. Stepping out of my daily course of living has made me feel like a complete failure. And then the voice of reason kicks in and I hear myself say, “If it weren’t for bipolar disorder life would be different.”

Finding Inspiration

I’m sure not everyone who experiences a mental illness has felt like a failure. But I am willing to bet many people have and I want to speak to those people. I want to tell them to lift up your head and hold it high; hold back your shoulders and walk with confidence; start believing you are so strong because you have faced off with adversity and you have won; you are a valuable member to the community; and you will find your way to recovery. Above all you are not a failure.

Mental illness can cause so much pain and many personal struggles. I have learned that I cannot give it any more power over me than what it deserves. I have approached it in a way that says, “I have a mental illness and it’s not my fault, and I’m going to pick up the pieces and move forward with my life. No mental illness is going to stop me from living a healthy, happy and productive life.” It’s my mantra and I believe it!

 

Bipolar Disorder is a Thief!

Bipolar Disorder Steals

In case you haven’t heard bipolar disorder is a thief. You know my life was going along just fine until I was hit with a severe bipolar episode. For all practical purposes I had it all—great career, wonderful relationship, plenty of money, a home with a pool, spa and basketball court, and plenty of friends. It didn’t take long from my first episode for my entire life to implode. At the end of the day it’s not the material things I missed most it’s the intangibles.

Actually it took about four years after my intital diagnosis before my life started to be completely disrupted. As you can imagine I spent a great deal of time blaming myself for allowing bipolar disorder to wreck havoc with my daily course of living. But really what’s a girl to do? Did I see the warning signs that if I didn’t get the proper treatment the illness was going to get worse? Nope. I can honestly say that no doctor ever said that to me until I was already living proof that it can get worse. At that time it was a no brainer.

Limited Resources & Stigma

See that’s the thing about mental illness. Because of the stigma and the limited amount of resources for treatment no one really sits you down and tells you the way things are gonna be. Often time they just write out a pile of prescriptions (that frequently make you gain a ton of weight) and they send you out the door. I don’t remember anyone ever taking the time to explain to me that according to the National Institute of Mental Health more than 80% of all bipolar patients experience psychosis. Who knew?

I had to take it upon myself to research bipolar illness long after I had experienced the gut wrenching losses because of the disorder. Often times I have found myself giving a therapist a specific statistic and/or fact about bipolar disease. I have been shocked that they didn’t know it. Then again, without playing too much of the victim role should I really have expected anything better?

Years of Treatment

It took me 13 years before I actually found a physician who could give me more insights about the illness than I already knew.   I don’t understand how people can go to school for more than 10 years and not be able to relate to a bipolar patient. It’s just beyond my comprehension that not only do we have limited resources for mental health treatment we don’t always have the best treatment either. But who is going to listen to that argument?

Being a Voice for Mental Illness

If I’m going to be completely honest I have to say I’m a little bitter. Even though I know hanging on to negative emotions about how things have worked out is not going to get me very far. I still have to admit I’d rather things worked out differently. So they didn’t’ and now I have to continue moving forward with my life. I have learned that if there is something you cannot change you can focus the passion and energy on the things you can change. This is why I am speaking out about mental illness. Because no one should have to suffer as much as this population of people do. I plan to use my energy on helping the cause. At least that’s a positive way to focus my valuable time.

 

The “Hearing Voices Simulator”

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.

“What’s psychosis?”

“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.

 

 

 

Mental Illness is no “gift!”

I have heard people say having bipolar disorder was a blessing as if the positive things about me had to be related to the illness. Mental illness is no gift. I don’t think I ever sat around after having a terrible cold and said, “What a wonderful gift that I was so sick.”

I recently read a blog by Natasha Tracy, which was titled Do the mentally ill have to be extraordinary to be accepted? She makes several points about how most people with mental illness are simply average, everyday folks trying to get along in this world. Not all of us are off the chart creative artists, famous world changing researchers or Nobel Peace Prize winners. We are simply “normal” people who happen to have a mental illness.

If you think about it, it’s kind of a shame that we have to put people on a pedestal to find some kind of acceptance. I think it falls right in there under the good ole’ stigma category. If we aren’t exceptional than what is our value in society, after all we have a mental illness. Oh my, so taboo.

It makes me sad to think about how common mental illness is and how we as a culture still fail to realize this fact. Consider that according to the National Institute of Mental Health over 57 million people suffer with a diagnosable mental illness each year. I’m sure you’ve seen the statistics–about 1 in 4 Americans have a mental illness.

Mental illness is common—yes. Mental illness is a gift—far from it.

I remember a day when I went to see a new family physician. She had known me from my days as a local “famous” athlete (from a very small town). When she found out I had bipolar disorder she said, “I knew there was a reason you could make the Olympic team. It must have been all that manic energy!”

I was so stunned I didn’t know what to say. How could someone who was a doctor actually think having bipolar disorder helped me to become an Olympian? Ridiculous. If anything I had to overcome the depressive episodes in order to get myself out of bed. The last thing I would have ever thought was “how lucky am I to have depression. It’s just so great! I can’t wait for more weight gain, so I can be slower on the court.”

I’m always amazed at how people find ways to accept they have a mental illness. It is not my place to judge others, but if I am voicing my own opinion I would be hard pressed to ever find any illness as a gift. I think of things like, suffering, symptoms, a lifetime of medication, doctor visits, therapy, significant losses, and I just shake my head knowing there is no way I could ever be grateful for having bipolar disorder.

I believe accepting yourself exactly how you are is far more important than getting on the band wagon to appreciate mental illness as a gift. I accept myself for who I am and I accept that I live with a mental illness and believe that I am no lesser of a person because of it.   It took me a long time to get to this point. But nowhere along the way did I ever pay some kind of tribute to living with a disease. It’s just not logical.

 

 

 

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.

 

 

Fighting the Bipolar Battle

Ever since I was diagnosed with bipolar disorder I have lived with different degrees of the illness.  Sometimes it has been a debilitating disease rendering me incapable of doing anything on a functional scale and leaving me to pick up the pieces and put my life back together.  At times I have had successful treatment and was able to live a relatively “normal” life.  Then there were times when I lived in denial not wanting to accept I had a mental illness.  Most recently I struggle between feeling good and fighting the depressive episodes which leave me unable to function and steal my days away.

In my experience the most difficult things to deal with are threefold:

1) Continually fighting off depressive episodes

2) Coming to terms with life after a major episode

3) Dealing with medication side effects

It seems there is always something I have to fight for—whether that is sleeping off the medication side effects or fighting to not believe the lies depression tells me—I am always in a battle with this illness.

Years ago had I known everything I know today about bipolar disorder I believe my outcome would have been far better off but this only adds to my present day frustration.  I would not have taken the risks of going without treatment because for me no treatment meant the illness would get worse.  I would have sought support from friends and family members instead of isolating myself and pushing people away.  I guess this is why they say, “hindsight is 20/20.”

At the same time, years ago I would never have blogged about mental illness much less be willing to talk about it.    I had so much self-stigma those close relatives like–shame and blame—and I had zero compassion for myself.  At least today I have learned to treat myself better.  Everyday I express myself I gain a little better understanding and give myself the gift of compassion.

I think a lot can be said for eliminating negative attitudes toward people who have mental illness.  There is so much we have to go through on a daily basis—the last thing we need is to have to deal with stigma on top of everything else.  But from my personal experience the worst kind of stigma is self-stigma.

One step I am taking is to remind myself everyday I have got to be kind to the woman in the mirror.  I have had to learn how to be nice to me because how can I expect others to treat me differently if I don’t treat myself well?  As the old adage says, “treat people the way you’d like to be treated,” and for me that means being nice to myself and forgiving myself for having a serious mental illness called bipolar disorder.

Living with a mental illness means so many things to so many people.  I believe it is in part about battling the symptoms of bipolar disorder and winning the fight I can win against self-stigma one thought at a time.  I know the illness is not going to go away, but I can guarantee self-stigma can be cured.

Diagnosis and Labels

Slide5

Back in 1999 I was first diagnosed with Bipolar Disorder.  I came into the mental health treatment system in crisis.  There were a multitude of reasons why but the bottom line was I was hearing for the first time I had a mental illness and I was feeling as if I was being labeled with some kind of curse.  Of course years later I came to realize the proper diagnosis was a critical step in the recovery process and though I did not want a stereotypical label I did need the diagnosis.

Now I know there are other types of diseases where “labels” negatively affect the person who is ill, (AIDS is one of those diseases that come to mind) but I can only begin to explain how terrible it feels to get that label.  What should have been a time to focus on understanding the diagnosis became a time to come up with all the reasons why it could not be right for me.  You see I had to learn how to accept this Bipolar diagnosis and come to terms with the negative affects from becoming a part of a population of people with illnesses that are largely misunderstood by the general population.

I can’t tell you how many times I cried about my diagnosis.  The energy I expended resisting having bipolar could have far better been applied to getting well.  The insight I gathered over time helped me to peel back the layers of complexity involved in accepting a mental illness diagnosis and subsequently focusing on wellness instead of resisting labels.

When I talk to people today who are recently diagnosed with Bipolar or who may have a family member who has been diagnosed I listen to the unnecessary pain people carry because of the stereotypical labels.  I try to reinforce the fact that many mental illnesses have treatments today that help people carry on and live healthy, productive lives.  All this followed by I know it’s not easy but a proper diagnosis is the first step toward recovery.

Slide6

I wish I could get rid of the negative connotations associated with having a mental illness.  But in the meantime I’d say focus on the diagnosis and try to forget about the label.  One of the keys to successful outcomes is early detection, so the sooner you have a proper diagnosis the quicker you can get well or at the very least learn how to live with the illness.

Labels are harmful but proper diagnosis saves lives!