“Is bipolar disorder contagious?”

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I’m driving home from the store with my 82 year old mother and we start talking about my book, “Bipolar Disorder, My Biggest Competitor,”  In many ways the book has unleashed good ole’ Esther.  Since I wrote about some of her struggles with bipolar disorder, she has talked more about it in two weeks, than I believe I have heard in more than 30 years.

Tonight she says, “People need to understand when you’re psychotic you don’t know what you’re doing.  But people don’t understand.  They think there’s something wrong with you and that they’ll get it too if they hang around you.”  “Mmm…is bipolar disorder contagious?” I asked jokingly.  “Some people think it is.  Like you have some horrible disease and if they come around they’ll get it.”  I laughed and we continued our drive home.

Then it hit me, after 30 years my mother finally articulated how bad she felt when her relatives stopped coming around.  They literally stopped inviting her to their houses.  She became an outcast.  The “crazy” sister.  Shame on them.  It’s not like all their lives were perfect either.

So, as a family member of a loved one with mental illness, I’m quick to defend my mother and sister.  But when it comes to me living with a mental illness and becoming an outcast myself, I sort of just give everyone a pass.  I suppose it’s because for so long I felt like I caused my own suffering.  It was my fault I had those episodes.

I ask my mother, “Who was there when you went through your first tough time?”  “You were,” she answered.  “Your dad didn’t know what to think.  But he would come in the house and ask me if I was doing alright.  He didn’t understand it, but he tried.  I’ll give him that”  I smiled and said, “There were a few people who I could have thrown under the bus in my book.  They did some not so nice things.  But I wanted to take the high road.  And truthfully, I didn’t want to spend time having a pity party for myself.  My life is far too blessed to feel sorry for myself.  I am exactly where I am supposed to be.”

However, as we drove further down the road I realized Esther really did have a point.  Some people treat bipolar disorder like it’s contagious.  As if a brain disease can magically rub off.  Perhaps that’s why they stop answering calls, not returning text messages or give you all your pictures and press clippings back, as one uncle did with me.  He had become ashamed of who I was, and when I needed him most he turned his back on me.

At the end of the day I just move on and say, “I’m not crazy, just contagiously bipolar.”  Whatever that means.

 

 

5 Reasons why I don’t like psychiatric medications – but I still take them

Overview

I am guessing you may have heard the reasons why people don’t like to take medications for psychiatric conditions.  It all sounds so easy, “It’s just like taking a blood pressure pill.”  “It’s no different than taking insulin for diabetes.”  Well, the truth is it is very different and there are several reasons why.  Here is the top 5 on my list.

#1 – They make you gain weight

There are few classes of psychiatric medications that do not cause weight gain.  With the exception of some medications for anxiety, almost all the medications for depression, bipolar and schizophrenia cause weight gain.  I managed to gain a slim 80 pounds!  It seemed like every time I was put on a new medication I gained 20 pounds.  I don’t know anyone who likes to gain weight.  But the reality is medications made me feel better and if I have to work at losing weight that’s just the trade off.  It is a valid concern for those of us with a mental illness.

#2 – Some make you feel like a “zombie” from the Walking Dead

Take a blood pressure pill and you rarely have a side effect.  On the other hand, take some high powered psychotropic drugs and you might feel like a zombie.  Usually this side effect goes away in time, but if it does not I encourage people to talk with their doctor to help adjust the medication or the dosage.  No one wants to feel worse and sometimes that is what happens.  Older medications are notorious for causing lethargy, work with your doctor there are many choices that might not make you feel as bad.  Above anything – don’t stop taking your medication without talking with your doctor first.  There can be some serious effects from stopping abruptly.

#3 – The Stigma of Mental Illness

It is the shame and misunderstanding that comes from stigma.  No one wants to feel as if they are not “sane.”  It is about credibility.  Not being different from other people.  We all want a sense of belonging, but not to a group that is discriminated against.  This no longer effects me much but in the past this really bothered me.

#4 – The medical community does not know the long-term effects

Less funding for research means less understanding for the long-term effects of medications.  Especially for a class of drugs called anti-psychotics.  They are used for many off-label conditions and the long-term effects are truly unknown.  What we do know is that people who have schizophrenia live on average 25 years less than other people.  We don’t know if that is related to medications or a number of other factors.  It’s hard to want to continue taking a medication without knowing what it will do to your body.

#5 – Branded products are expensive

The latest greatest products are extremely expensive.  Some drugs can cost $1600 a month making it impossible for people without great insurance to afford the medications that may have less side effects.  Generic drugs don’t cost much at all and some have been shown to be as effective as the newer products.  If you take 3 or 4 prescriptions a month it gets a little pricey.

So these are my top 5 reasons why I don’t like psychiatric medications.  But here is the disclaimer – I still take them because I know without them I can’t live a good life.  They help my symptoms and make it possible for me to live a “normal” life.  Without the medications I don’t know what would happen to me and I am unwilling to take the risk to find out.  But there are a group of people who don’t believe in them, I am not one of them.  Suffering is not worth going without a medication that is going to make you feel better in the long term.  There are trade offs with everything in life.

 

7 Things I learned at the psych ward

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Does the title of this blog scare you?  Does it make you laugh?  Does it make you cry?  Make you shudder?  It might do one or all of those things.  Most people NEVER want to admit they have been to a psychiatric hospital.  I can’t say I would have ever dreamed I would be talking about this out loud.  But the path between me and a psych ward is pretty long ago and I feel like there is something to be learned from every experience.  And as a mental health advocate I believe we should never be ashamed from getting the help we need.  In this spirit I share…

Here are seven things I learned at the psych ward:

#1)  It is NO fun to be LOCKED up

My first trip for inpatient care was 17 years ago and I was terrified when the door locked behind me.  I understand the door is locked for patients and public safety, but it does not discount my feelings of fear.  It reminded me of all the bad things I had ever heard about mental institutions.  Yes, even though I might not have been in my best frame of mind I still had thoughts and feelings.  There are places that do not lock the door, but those are few and far between.  No sugar coating.  Being locked away was a degrading feeling.

#2)  Most people there are “normal”

What is normal anyway?  Well, that’s your average everyday person who has goals, dreams and a life outside of the hospital door.  People from all walks of life visit the psych ward every single day.  They are just normal people – husbands, wives, daughters, sons – they just happen to be struggling with an illness.

#3)  The staff is a reflection of society (stigma exists)

There are good people, bad people and somewhere in between who work in the psych ward.  I have been treated extremely well by many people, but I have also been discounted, discouraged and disenchanted.  Some staff are very knowledgeable and willing to teach about a specific illness and others can’t wait until their shift ends.  Just a reflection of society.

#4)  You don’t recover in the hospital

Think about being hospitalized for any physical illness.  A person who has had open heart surgery is not going to get well over night in the hospital.  We are a quick fix culture, especially when it comes to mental illness.  But it takes time and effort to fully recover.

#5)  Some people are more sick than others

Mental illness is on a continuum.  Every disease has common signs and symptoms but will manifest differently in each person.  Some people will never get well and probably need to be in a hospital for continuous care.  But most people can get better.

#6)  Some places are better than others

I have been in a hospital that had a swimming pool and basketball court, but that’s the exception.  I have also been to a place that did not have enough chairs for everyone to sit. The most important thing is that a person gets the right kind of care that they need and clearly some places do provide it and others do not.

#7)  They don’t want to keep you there

Contrary to popular belief psych wards do not want to keep people there.  One of the biggest issues we have in America is the poor mental health treatment that is available.  It is often poor because people who need treatment can’t get treatment and if people get treatment they don’t keep people long enough – the average inpatient stay in the United States is 7.2 days.  For some illnesses that is not long enough.

How does Orange is the New Black handle Mental Illness

If you are a Netflix viewer you may have recently watched Season 4 of Orange is the New Black and could not have missed the storylines with mental illness.  It was not a subtle portrayal.  Mental illness was everywhere.

The character who saves another inmates life was hearing voices and experiencing delusions.  They gave us the back story and she was a person with mental illness who lost her job as a journalist when her mental illness started to get worse.  Loly ends up homeless and eventually arrested for disorderly conduct.  She gets slammed on the ground by two police officers who come upon her because people in an upscale neighborhood were complaining about her being there.  The police throw her on the ground and handcuff her while calling in to dispatch how she may be “drunk” or “psychotic.”  This is how she ends up in prison.  The police officers obviously don’t have crisis intervention training nor mental heath first aid.

By the end of season four Loly gets locked up in the forensic psych unit for allegedly murdering someone.  She starts to scream and cry while the audience is shown someone in the background who is yelling and is restrained forcefully.  Everyone in the prison knows you don’t want to get sent to the “psych unit.”  It does foster a bit of the stereotypical way we view inpatient psychiatric care, then again it is a prison so the psych unit might be portrayed appropriately.

The one thing that bothered me about this scenario was the fact that she had to have a mental illness and be accused of murder.  Everything else was really handled so well.  It is likely that a consequence of untreated severe mental illness can be joblessness and homelessness.  It happens more frequently than we like to believe.  But the murder part I could do without (spoiler alert:  she actually didn’t do it but thinks she did).

Then there was the character Mr. Heely.  He is the inmate counselor who walks into a lake with the intention of taking his own life.  In just the right time he gets a phone call from work and realized Loly’s delusions about saying their was a dead man buried in the garden were actually true.  By the end of the show he is voluntarily admitting himself to inpatient psychiatric care that is actually scripted quite well.  The last season shows him sitting on his bed knitting – minus the knitting needles which they don’t have in a psych unit because people may use those to hurt themselves – the gist is right on the money.

The courage of him taking himself to the psych unit is amazing.  One of the few men on the show and he admits himself for psychiatric care…wow!  This is a little more hard to believe because it is very difficult for males to admit they have a problem let alone seek treatment.  But good for the show creators to lead us in the proper direction of how it should be done.

One of the main characters is called “Crazy Eyes.”  She actually had been doing quite well with her mental health until the last few episodes.  But as the name implies she does have a tendency to get a little “crazy.”  She gets violent after being provoked and beats someone up.  She goes into a “zombie” like trance and then has a horrible accident.  The way the character has been developed you know she is a short fuse away from having some type of tragic accident.  But she is also vulnerable and that point is made very well.

Overall, I would have to give the creators of “Orange is the New Black” an A- in trying to tackle mental illness.  They obviously put a great deal of thought into how to delicately dramatize a person’s fragile mental state.  A significant amount of time was spent teaching us about hallucinations and delusions through a character’s suffering.  I like how they did not shy away from any of it.

I can see how all of it might just be very close to reality.

 

 

 

Feeling “Less Than”

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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.

 

 

 

 

 

 

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.

 

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.

 

 

 

 

From Olympic Athlete to Bipolar Patient, Who am I really?

I recently wrote my bipolar journey for Mental Health Talk.  Trish, the founder of the site has lots of opportunity for those people who are living with a Mental Illness to share their stories.

If you are interested in reading about my journey from being an Olympian to getting diagnosed with bipolar disorder here is the link to Mental Health Talk:

http://mentalhealthtalk.info/bipolar-olympic-athlete

I would also encourage people who want to share their stories get in contact with Trish.  The more people who share the better opportunity we all have to continue to knock down stigma and to let others know they are not alone in this battle.

Disclosing a Mental Illness

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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.