Labels and allowing yourself to become an illness.

     Is it really useful to have a label to apply to yourself, especially in the context with a disorder or illness?  While many people who have a mental health diagnosis eventually move past this label, it can be hard for some to accept that they are more than their diagnosis.  I know one individual that relates every experience they have to their diagnosis.  They have self-imposed this sort of rigid set of definitions upon themselves such that everything that occurs does so because of their illness.  Partly, in their case, it is done because that is all they have known.  However, many people who have lived a “normal” life before being forced to live with a diagnosis adhere to this same behavior.

     Though I have spoken on the issue of being more than just a list of symptoms, it needs repeating that when professionals reduce us to a series of symptoms and responses; we begin to adhere to this view.  I agree it is nice to be able to identify what is wrong and be able to give it a name, but there is a subtle difference between the sayings “I am bipolar” and “I have bipolar.”  Replace any other health condition with bipolar and see how the statements stand up.  “I am a cold.”  “I have a cold.”  “I am diabetes.”  “I have diabetes.”

     Why is it that so many people are taught to think the former?  They begin to see everything they do as a symptom.  I have often seen people who think they should have no affect.  If they begin to get agitated they immediately say that they need a medication adjustment.  I, personally, am on the opposite end of this spectrum and have refused to see that my medication did need to be changed.  Often medications are given that can reduce a person to next to no discernible personality.  I was on a particular medication for over a year.  This medication sedated me, robbed me of my ability to speak clearly, and made me a different person.  I was on this medication since before my psychiatrist, therapist, or psychosocial rehabilitation facilitators knew me and therefore assumed that this was the way I was supposed to be.

     Sure my symptoms were gone, and I thought that was all that mattered, so I put up with the side effects.  I assumed that putting up with not having a personality was my curse for having a mental illness.  As such I boxed myself into a checklist of symptoms and noticed I had none of them and assumed I was doing well.  To my psychiatrist my symptoms were gone, and that was good enough.  If I was feeling sedated, I should split my dose.  If I was feeling lethargic, it was due to a lack of exercise, not the medication.  The medication was working.  I became my illness such that all I could think of was reducing my symptoms through medication.

     Medication is a very important aspect of mental health recovery.  Ever since switching my medication I have become a “new” person.  That is, I became the person I was before being diagnosed.  They found the right medications for me, and did so fairly quickly.  For some people, this process takes years.  I got lucky.  However, medications are not the be-all end-all.  To medicate your symptoms away and not allow yourself the freedom to experience life is allowing your diagnosis to rule your life.  Realize that there is a lot of work and “personal medicine” to be used in conjunction with psychiatric medication.

     Please do not wish away every emotion.  Be anxious, be sad, and be a little excitable from time to time.  However if you truly feel off, perhaps a medication discussion is in order.   It just should not be the first place to jump to.  If a situation makes you anxious, popping a pill to relieve the anxiety will just reinforce the notion that when anxious a pill makes it better.  Sure, for some people this may be the only course of action.  I would fashion that many people can learn to overcome their anxiety much like any other phobia.  

--JJM

My feelings of shame regarding my mental illness.

     The moment I realized I needed help with my mental health issues and seriously went about seeking treatment was when I was on a business trip.  There was a crisis situation and I didn’t know who else to contact so I contacted my superior who was also in the same hotel and floor as me.  I was seriously out of it, no shoes, my shirt was on backwards, and I can’t even begin to tell you what my hair looked like.  I asked her to take me to the hospital.  It was probably the single longest rides of my life.

     I remember the advice she gave me.  “Don’t tell them what really happened.”  I ignored this advice; however what information I did give the hospital was fuzzy at best.  I reasoned (somehow, given my then current mental and emotional state) that if the hospital did not know what I had done, their treatment would be ineffective.  Several hours later I came to be able to understand the world around me again.  It was then that I learned that my supervisor had stayed to make sure I was okay.  I was surprised by this.

     There was an intense shame in her staying.  What would she think of me, and what would she tell my co-workers?  Even odder was that at the time I also did not want my wife to know where I was or what was going on.  Again, though she knew I needed help (we had hoped it would be manageable until I could get some form of insurance) I did not want her to know just how far I had fallen.  I was severely embarrassed, and afraid that she would find me disgusting and want to leave me.

     I think it was the mid-afternoon of the next day of my stay in ICU that I called her.  Shame was all I felt as I called her, and when she came and embraced me, there was still that shame.  It was discovered that my co-workers knew I was in the hospital (though they did not know exactly why) and wanted to visit me.  Of course this thought filled me with the utmost of dread and I vehemently disallowed such visitation.

     When I got out of the hospital I was still very fragile, getting used to medication and readjusting to a psyche that fully realized what it was capable of made me very emotional.  Everyone asked me where I had been, and when I replied “the hospital” their next question was always “what for?”  I was, and am, a firm believer that most people do not actually care, they are just very nosy.  This left me with a vortex of shame as well.  I justified it with “It is none of their business.”  Honestly though, would I have felt the same way if I had gone in for a medical procedure?  I would have to venture a “probably not.”  I concocted a basic, essentially true, story-- I was in the hospital for a previously untreated condition.

     This did not stop me from worrying that my supervisor had told people what had really gone on and people just wanted the gory details, so to speak.  As such I became increasingly paranoid that my illness was showing, and that someone would piece together what had really happened.  Talking to my therapist about my life and my job we needed to modify my employer’s expectations of what I could and could not do.  Getting a doctor’s note modifying my duties was easy, but attempting to explain to my supervisors these changes needed to be made was nearly impossible.

     There was a strange mixture of shame, fear, and anger when they would ask why these changes needed to be made.  I would say that “my doctor thinks it is best for my overall health and recovery,” but this would not suffice for them.  I felt anger that my answer was not good enough, and shame that I may have to tell them exactly what happened. 

     Around this time, they transferred a co-worker out my department and exiled her to menial work when she admitted she was on medication for depression.  Whenever she made even the smallest mistake they blamed it on her illness and said that she could no longer do her job.  This was after three years of doing that same job while no one knew what was going on.

     This notion terrified me.  I couldn’t handle being in any other position, let alone another department.  I needed time off for therapy and doctor’s appointments—and psychosocial rehabilitation.  They asked me why I needed such time off and that it was unfair for me to expect that kind of special consideration.  As time moved forward it became apparent that I needed to transfer to a different location.  This transfer was denied because of my medical issues.  As such, I was left with this utterly destroyed feeling.

     This has lead to more time in the rehabilitation program and more time to focus on recovery as a whole through therapy and proper medication (it took a while for them to get the cocktail right).  As such I have become more comfortable in knowing that there is nothing inherently wrong with me on a social level, I just have some issues (and who doesn’t?).  If I am ever in a similar position again, I feel confident that I can now stand up and admit what had happened, not feel ashamed of it, and deal with the consequences of this attitude with assertiveness and strength.  I would certainly handle it without the fear and shame I felt in the past.

     I know I am not the only one who has felt this way in dealing with their diagnosis as it pertains to the social ramifications of having any mental illness.    I offer only this thought:  in order for there to be a wave something must move.  If we (those with any kind of diagnosis) allow ourselves to be brow-beaten and made to feel so much shame it will continue to happen.  Only when enough people stand up and do not allow the fear of stigmatization to overwhelm them can things begin to change.  A wave starts small, nearly unnoticeable, but eventually it gains momentum and cannot easily be stopped.

--JJM

Yet another update on the Finding a Voice in a Maelstrom project (Official sites up)

     I know there was just an update a few days ago, but some stuff has happened so I feel inclined to share those happenings.

     There is now an official Facebook page for the project, which can be located here:  http://www.facebook.com/FAVIAMproject

     There is also an official webpage that is nearing completion.  There are just a few minor tweaks that need to be addressed.  Of note is the "Submit your Story" section.  I want it to be made clear that you can submit your voice, not just your story.  If you have a poem about mental health issues, or a short piece on what it is like for you to have your particular diagnosis that that is what can also be shared.  Not just your so-called "story."  Please feel free to start submitting your voice.

     There is a link to the webpage on the right hand side of the blog that can be followed, or else it can be found here:   https://sites.google.com/site/voiceinamaelstrom/home 

     One last thing of importance I have finally gotten artist's work for the project so it is moving forward on that front.  I am still looking for graphic artists though.

     I look forward to seeing where this project will take us.

--JJM

My experiences with the mental health system.

     For a year and a half I saw my psychiatrist once every three months for ten minutes at a time.  In ten minutes he diagnosed me.  Additionally, I had already been on medication for my symptoms for several weeks before the diagnosis, therefore reducing the severity of the symptoms for his observance.  To confound the process further I was on a medication that completely flattened my mood.  I told him numerous times that this medication left me in a fog and he continued to leave me on it “because it seemed to work.”

     This may not be the case for every person who enters the mental health system, but this story is far too common.  The psychiatrist refuses to listen to the client’s wishes, or minimizes them.  It was not until my regular psychiatrist was out for an extended medical leave that I was seen by a replacement.  This replacement took the time to get to know me and my symptoms.  She explained to me the way being diagnosed works (a thing that had never been explained to me before), that it is not how I am feeling now that is important but how I feel when I am not medicated that determines a diagnosis.  She went over options for medication, and when I said that I did not have insurance she helped me work on getting an assistance program and samples for the medication I am currently on.

     My previous psychiatrist was an adamant believer that psychiatric medications had no impact on weight gain despite many people, myself included, who ate the same as before but continued to gain weight on certain medications.  I am lucky in that I had a therapist who is willing to sit in on doctor’s visits to describe what has been going on from her perspective as well as mine.

     Again, I do not know how often other people in the system find this, but this is the first time in all of my years of attempting to seek treatment that I have encountered it.

    I have found that being in the hospital can be a dehumanizing experience.  Very true the rights of patients have gotten so much better compared to even twenty years ago, but I often felt patronized and belittled.  While I understand the purpose of short term hospitalization is to allow time to recuperate after a crisis situation, and people cope differently.  I was in two hospitals where you spent most of your day doing absolutely nothing.  To compound matters you were not forced to participate in the therapeutic process.  Out of the hospital stays I have had, most of the group therapy activities are bland and clinical.  I found the walls to be an off-putting color and very bland.  It was sterile.  It made me feel all the more sick.

     It is not entirely the fault of the hospital though.  They receive such little funding, and each year that funding is cut.  You are sent in, get a preliminary diagnosis, get put on some meds, and then you are given your discharge papers with follow-up instructions.  That’s it.  You aren’t told how having this diagnosis is going to change your life.  That is what I wish I would have been able to learn in the hospital.  How these medications were going to make me feel, how others would treat me, what my options were when it came to doctors, medications, and therapists. 

     Without proper funding, mental health care will continue to decline and make it harder for people to get the help they need.    All governments need to realize this is a priority.

--JJM

Mental Health awareness and stigma.

     There needs to be a dialog about mental health awareness.  While there are many support groups and communities for those who live with mental illness, there are few for friends and family members of those people.  There is little communication about mental health directed, not at the population at large, but at those who need the help.  While it is wonderful that more people are being told that it is okay to get help, to encourage them to seek help, not enough is being discussed on the issues of erasing the stigma of mental illness.  There are places that demonstrate warning signs, and give people a place to turn to if a loved one is suffering.

     Likewise the information provided is very dry and clinical.  And this is what the resources are meant to be and there is nothing wrong with that.  However, there is precious little out there that describes what it is like to have lived with mental health issues.  Without context, knowledge is trivial.  There is also little being done to challenge the stereotypes presented.  There are many stereotypes of those who live with mental health issues such as being a psychokiller, lacking self control, having too much self pity, shy, unintelligent, using the diagnosis as a crutch, and incapable.

     The problems are, in my mind, twofold.  A person who has mental health issues is afraid to be honest with friends and family due to being stigmatized, which leads to them not seeking the treatment they need.  Secondly it leads communities to being afraid of mental health care facilities being in or around their area, reducing the amount of help available to those seeking treatment.

     So who is to blame?  I’m going to generalize and say it is a mixture between the media, and those who live with their issues.  Allow me to elaborate.  We are afraid of being stigmatized yet we are the only ones with the ability to lift those same stereotypes that we are subjected to.  People in my circle are ashamed whenever the news airs a story about a crime committed by someone who is receiving mental health treatment.  Yet, those same people are too afraid of what will happen if they make their voice heard.  There are pop culture icons who admit they seek treatment for their mental well being, but the media is uninterested.  It is our job to raise awareness every chance we get.

     I say, shame on the media for focusing only on the negative aspects of mental health.  Also, how dare the population allow their perceptions of the many to be influenced by the actions of just a few individuals?  There needs to be more open and honest dialog from the mental health community about what it is like, what we really go through, how we lead normal everyday lives, and how some of us extraordinary lives.

     It will be a long and bumpy ride for even the chance to begin to sway public opinion, but it must be done.  Too many suffer in silence.  Too many feel so isolated from the world.  What steps can we take to be heard?  Continue to do as we always have firstly, but secondly talk to people and challenge their attitudes.

     People use words like “crazy,” “nuts,” “loony,” “psycho,” and call hospitals such things as “the funny farm,” or “the nut house.”  This is offensive.  Calling someone “crazy” is like using the word “fag.”  It hurts (admitted it may not carry exactly the same weight).  Try and be comfortable with defending those with mental health issues, including (if you too have issues) yourself.  Ask them why they would say something like that.  Be knowledgeable and offer counter points.

     I was once given advice to hide my mental illness-- not everyone needs to know.  This is basically true, but that can lead to shame.  I am not ashamed to be seeking mental health treatment, and no one else should be either.  People often do not hide political or religious views.  Likewise they are not ashamed of physical ailments.

     My hope is that one day the topic can be treated with the same candor that heartburn or any other physical issue is.

--JJM

My thoughts on seeking mental health treatment.

     Treatment is a funny thing.  As much as other people want to help their loved ones get the help they need it is up to the individual to seek treatment.  Even if they are forced into a hospital setting to a limited degree they can refuse treatment while in there, or even if they are medication compliant they can stop treatment at any time after they get out.  They may not think they have a problem, or even if they do admit a problem they may think they can control it on their own.  Likewise the issue of money comes into play because treatment can get quite expensive between the doctors and medication (let alone therapy if need be).

     Like quitting smoking or drinking, until a major event occurs that impacts either their safety or the safety of others, it is unlikely the individual will admit that they don’t have it as under control as they think they do.  And even if they do get treatment, things may not go exactly according to plan.

     I remember the first time I attempted to actually seek treatment for my issues.  It was not a crisis situation and I was working full time.  I had a therapist that I couldn’t stand and no one explained to me that for the first week or so most psychiatric medications cause a sense of sedation.  I felt zombified and instead of continuing to take my medication I stopped.  Instead of asking for a different therapist, I stopped going.

     If someone had been there to say such things as “You are allowed to change therapists,” “stick with your medication, it should get better,” or “if you don’t like the way your medicine makes you feel, you can explore other options” things would have turned out differently.  You may not have many options, but there is almost always more than a single option.

     Many people think help can be cost prohibitive.  While it can be costly, many areas offer programs that work on sliding scales to make treatment affordable to anyone.  Likewise, even if you don’t have insurance and your medication is expensive many pharmaceutical companies offer assistance programs.  I save over $600 a month via prescription assistance programs and my therapy is on a sliding income scale.

     Perhaps my situation may be considered “lucky” but I know many people in the same boat as I am.  There are more options out there than most people realize.  For many people, knowing where to start in the whole process can be overwhelming and that may also contribute to some people’s resistance to treatment.

     So what can people do to help?  Be patient.  I know you are scared for us, but we are scared, too, and need to come to terms with what is going on.  Be there for us.  Be willing to tell us that you do worry about us, but don’t pressure us unduly.  Be proactive.  We may not know where to turn to help and may be so frazzled by the whole thing that we are emotionally unable to deal with trying to get help.  I don’t mean for you to have the local hospital on speed dial, I mean help us do the research, or do it on your own so that when we say “I just don’t know what to do” you have some concrete help to give us.

     I’m not saying advice isn’t a good thing, but be mindful of the advice you are giving.  Telling us to cheer up?  That is not exactly helpful.  Telling us everything is going to be okay may sound like a great idea, but depending on what the person is going through, they may think only “easy for you to say.”  Avoid “you” statements and instead use “I” statements.  “I think, I feel.”    But don’t be a pushover either.  If some behavior is unacceptable, say so.  If we are being a jerk, tell us “That really hurt my feelings.”  It will help solidify that we are hurting others and we don’t have the level of control we think we do.

     Helping someone seek treatment is no easy task.  I do not envy those who support people through the entire process; it must be a hard thing to do.    But for those of you with the strength, thank you.  You may not hear that enough at first, but once your friend/loved one is in a better position you will often hear it.

--JJM