Why having a mental illness makes you strong

strength-quotes-picture

I have been putting the final touches on a book I am writing, “Bipolar Disorder My Biggest Competitor.”  It has made me look deeply into myself as a character in a story.  It is the strangest thing reading about this character and knowing it is me.  But this experience has had a profound impact on how I see myself–sometimes victim, sometimes hero, and yes sometimes villain.  But always strong.

If you live with a mental illness you know exactly what I am talking about.  The times when you lie in bed feeling miserable and wish the depression would stop haunting you.  And then you do it–you make yourself get up and get out among the living.  In that moment you beat it.  You won.

How about the times when you thought you might never get well again, but kept battling and recovered?  Even in those darkest moments you found the beacon of hope glaring through the fog.

Then there are those times when you get “the look” from other people who know you live with a mental illness.  It strikes the chord of paranoia and you wonder, “What is she thinking about me?”  But you coach yourself through it and tell yourself, “It is okay.  I really don’t know what she was thinking.”  You overcome the negative thoughts.  You beat “the look.”

What about those days when the trusted family member makes a joke about your mental health?  You feel horrible but can’t get any compassion from the people closest to you.  But you hang in there and keep fighting.  You hope tomorrow will be better.

Believing mental illness makes you strong is opposite of what people have told us about it.  Remember every battle you have had to fight, every bit of shame and guilt you have faced head on, and every medication you have to take just to feel somewhat “normal,” these are the things that make you strong.  Stronger than you may think you are.

 

Time to Talk Mental Illness

It’s hard to believe it is 2017!  I am not sure where the time has gone, but I do know after all these years of living with the stigma of mental illness it is for sure past time we talk about it.  There are so many anti-stigma efforts and I do feel like we are moving the needle some, but it is not enough.  And from my perspective it is not happening fast, it is a slow drip-drip-drip.

I never thought I would have to live with some illness called bipolar disorder that many people really did not understand and if you said you had a manic episode they really would not know what you meant.  Really I wasn’t sure what it meant for many years, until I studied it so much so I could manage it.  In reality, everyone with bipolar disorder experiences it a little bit differently.  Clusters of symptoms may be the same, but how we behave and handle our illnesses are generally not a carbon copy of it.

We have to talk about mental illness because quite frankly it is so complicated it is hard to understand.  Some illnesses are easier than others but I would argue for even the people who have anxiety disorders they will find not everyone understands how debilitating that can be.  Many people believe you should just be able to take a pill and “get over it.”

With 1 in 5 Americans living with a mental illness that equates to about 20% of the populations.  Yes, there are far less of us who have severe mental illness like bipolar disorder, major depression and schizophrenia, but we still represent million of people.  This really means that everyone knows someone who has a mental illness…and if you think you don’t it is probably simply because they don’t talk about it.

I want you to ask yourself the question, “If I found out my best friend had been struggling with severe depression for years, would that change how I felt about them?”  What about if you found out your sister had been struggling with postpartum depression with psychotic features would you know what that meant?     How about your boss at work who seems to have major mood swings between being very gregarious and not talking at all.  What do you say?  What do you do?

If we don’t talk about mental illness we will continue to find ourselves in these socially awkward situations where we don’t know how to react or what to say.  Granted it is not as bad as it used to be, but it could be a lot better.

Of course I don’t believe everyone should write a blog or a book about their struggles with mental illness.  But I do believe people should not have to be afraid to tell others they are struggling with a mental illness.  It is truly a shame to have to keep something a secret that occupies a great deal of time and effort.  Managing a chronic mental illness is a HUGE effort.  There are doctor and therapy appointments, medication side effects to deal with, prescriptions to refill, and symptoms to deal with.  It is at times a very hard road to journey on.

My one wish is that other people could feel more free to talk about it so there will be a greater understanding.  Maybe then those who live with mental illness will feel more supported.  Maybe then there will be more research dollars to help fund better treatments with higher efficacy.  Maybe then there will be better access to care.  Maybe then people with mental illness won’t be housed in jails and prisons.  Maybe then our society will be more compassionate.  Maybe….just maybe people won’t have to suffer in isolation.

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

30034114-368-k479561

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.

 

 

 

Rebuilding a Bipolar Life

spiritual_meditation

Rebuilding a life is not easy. I am not the first person to venture out and attempt it and I surely won’t be the last. But when it is “you” it sure seems like an uphill battle. When I started this journey I said to myself, “What the heck is the first step I am going to take? Where do I start?” The answer came back in various forms but eventually it led me to write a plan. Not like some extensive business plan, but something where I could look at my life split up into categories.

It’s not the least controversial but I started a thoughtful process of thinking about my “spiritual self.”  Bottom-line is I figured out that I was/am mad at “God.”  Even though I will be the first to tell you that I prayed daily when I was on the verge of suicidal depression. Without my faith I don’t know if I could have made it.

But then as time passed I began to ask why God would ever allow bipolar disorder to destroy my life? Some people have suggested that you need someone to blame for the bad stuff that happened so it is very natural to blame God. They say he can take whatever you need to dish out—so blame away. But the problem with it is it does not provide a sense of relief or a salve for the wounds. It’s just a place to put anger.

My spiritual side also includes my “heart’s passions” too. I don’t know about you but when I am depressed I have very little passion for anything.  My spiritual self just seems dead, like I am a “numb” shell of myself walking around without any feeling, except sadness. Since I have spent so much of my time in the past six years in and out of depressive episodes, my zest for life went on strike.

I discovered breathing life back into my spiritual self was/is crucial for rebuilding my life. How can I have the strength and courage to push forward in other areas of my life without having a solid foundation of spiritual strength to draw from?

The first step in changing anything is recognizing you need to change it. I began asking myself a series of questions. What do I do about my anger with God? Do I see a traditional pastor and have him pray with me? Do I seek out a new church and sing along with religious songs? Do I take a walk in the park and curse God? How do I resolve these spiritual wounds?

As with the other areas of my life I am rebuilding, it all starts with one small step at a time. I may have a vision in the future where I am really in touch with my spiritual self and all of my anger issues with God have been resolved. I am working in that direction, but I am not quite there yet. I have learned this journey is a very long one and as I work to breath life into my existence I can work on all areas of my life at one time. I seriously doubt I am the first person to ever blame God for this nasty mental illness.

My spiritual being is very important to me and perhaps just knowing I have the passion and desire to make these necessary changes are proof that my spirit is very much alive and well. I am less angry with God now that I have really learned to accept “what is.” I may not like what has happened to me because of bipolar disorder, but I do need to accept it.  Spiritually, I can feel myself living once again.

 

 

Bipolar Disorder Destroys Life and Then What?

Bipolar disorder not only disrupted my life it destroyed it. Every area of my life that I call my Pie of Life was affected: spiritual, financial, relationships/friendships, work, physical health and mental health. It took me a very long time to identify and process how each of these areas have been mutilated by an uncontrolled illness. But after recognizing the destruction I had to literally go back and start to pick up the pieces.

After I got my symptoms under control, I started to tell myself things like, “you deserve a life again.” But having a life meant facing the fall-out of all the things I no longer had and that was a terribly painful process. What also made it worse is that I had no “battle buddy” to walk the journey with me. I had a few family members but none who I really talked too about what I was going through on a daily basis. I might mention my struggles every now and then, but I never hashed it out.

I did utilize the services of a therapist and she was very supportive as I went through the “damage control” process. I found her most helpful as a support person for dealing with my last episode that resulted in a hospitalization. She helped me recover from the trauma inpatient care can sometimes inflict. As a matter of fact, I recently read someone’s blog where she was talking about how her therapist suggested she might have developed PTSD from a recent hospitalization. I have also been diagnosed with PTSD from things that happened during my episodes and then my subsequent hospitalizations. Trauma is trauma. Sometimes it does not necessarily matter, as much how we get to that point for the end result is similar.

Picking up the pieces of a shattered life is not a lot of fun. It is difficult to identify where you are going to start, let alone find the confidence to take one baby step forward and try. I found returning to my Depression and Bipolar Support Alliance group very helpful. Even though I have to admit I was skeptical that I would find as much support as I did. I simply did not know where to turn as I started piecing my life back together again, like a complex jigsaw puzzle with a million little pieces.

I actually sat down and made a plan. Even though I had an idea of what I wanted I knew if I could see it written down it may make even a bigger impact on me. So, I took each category of my Pie of Life and wrote it down and gave it a preliminary evaluation. I decided I would share with you my journey as I tediously rebuild my life.

I can tell you that in the area of relationships/friendships I have found great camaraderie in the blogging world. The active followers, viewers and readers have really made a difference in inspiring me to continue to write. It has also given me a connection to many individuals who understand the journey is not for the faint of heart. You have to dig down deep to want to attempt to rebuild your life. I have to give a big “thank you” to those who have encouraged me. I bet you didn’t know you had the power to influence a life when you wrote those comments or clicked on “like.” Little things make big differences!

I hope you will join me as I share the steps I am taking to build my life all over again. This is one way I know I will beat bipolar disorder.

 

 

On Break from my Bipolar Self!

Well in case you haven’t noticed I have been away several days from the blogging world. I would like to say I was far off somewhere in the middle of an exotic island enjoying a fruit-filled cocktail, but that would be a fantasy.  No, I have just been enjoying the ups and downs of a bipolar life.

Even though I changed medication I still get those lingering mild depression symptoms and when that happens my concentration goes. Not to the point of being unable to carry on a conversation, but to the point where putting pen to paper is nearly impossible. Then, for whatever reason, the concentration cloud lifts and my head gets really clear. Alas, here I am.

I do romanticize about taking a break from my bipolar self. I think about how I will rebuild my life with cool people and we will laugh and talk and genuinely enjoy each other’s company. In that time there will be no discussion about which anti-psychotic has more weight gain and what one costs the most money. None of us would have to worry about whether we missed a dose of medication or added a pill we usually don’t take that knocked us out for a day (that’s me-I slept until 3pm). We could even grab a beer or glass of wine without feeling guilty.

Yes in my unbipolar world there would be no time to laugh at funny things therapists might say to you. Numbers would only be used for phone numbers and not for involuntary commitments (5150). There would be no pain and suffering to discuss because everyone would feel awesome. When we referred to a tool kit – meditation would not be something you would find in it. A tool kit would be about hammers and nails, not coping mechanisms for serious mental illnesses.

Finally, when I woke up every morning I could open my eyes and make believe I was going to feel great before my first cup of coffee. There would be no such thing as a medication hangover. I could ignore many of the bad memories that harbor in my mind because of my illness. It would never bother me again.

Well, it only takes a short time to realize there are a few things I would miss and that is the wonderful people I have met because I have bipolar disorder. And so what – we have different things in common than the average person, but we can find a lot of humor in living our lives with mental illness. They always say – laughter is the best medicine! Oh how I believe it is true!

Thanks for reading friends! And thanks for all your well wishes while I was away.

Are you addicted to Bipolar Disorder?

Recently I watched a video clip about ABC’s new show Black Box. If you haven’t seen Black Box it is about a neuroscientist who also lives with Bipolar Disorder. The strange thing to me is that they say she is “addicted to bipolar,” because she loves the manic highs. I don’t think I have ever heard it put that way before, but I suppose it is because I have a rather opposing viewpoint. (You can view the video here Black Box Video)

When I retrospectively look back at the times I have had manic episodes, I really don’t find a lot of positive aspects. During those episodes I have bought things I didn’t need, got involved with some people I would never let my dog talk too, almost lost my life, and really the list goes on and on. High intense manic episodes have made me want to adhere to a treatment regimen that works not seek out more mania.

I don’t dislike Black Box but I wonder what the basic viewer thinks about bipolar disorder as a result of watching it? To my knowledge the main character has yet to experience deep levels of depression—which we all know is where the disorder spends most of its’ time. We also know that in treating bipolar disorder it can take an average of 10 years before finding the right combination of medications. Not so simple as saying the character could have a wonderful, symptom free life if she only took her medication as prescribed.

If I have stopped taking my medication it is because of a few key reasons:

1) I didn’t think I had bipolar disorder—I was in denial

2) The side effects of the medications were so bad I couldn’t tolerate them

3) I started to relapse and didn’t recognize I was getting sick—so I stopped the meds

There has not been anytime in my history with this illness that I said, “I love the mania and I am addicted to it.” Most of the time I didn’t even know what the mania was let alone want more of it. It was more like living with something that was so natural to me. My normal was experiencing “highs” and “lows” and I thought everyone experienced the same kind of thing. I’ve never known what normal is because I’ve never had normal for an extended period of time.

Do I miss the mania now that I have a treatment regimen that works? If I miss anything it is the energy to do things, some of which is controlled by medication and some of it is a side effect from medication. What I miss more than mania is a life that was fuller before I got so sick with bipolar disorder that I could not function.

I know it’s hard to portray characters in the media with mental illness, but I wish they wouldn’t glamorize bipolar disorder. I wish they would take real live people and tell their stories. I doubt that many of us who have really suffered with this illness would say we are addicted to it.

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.