A few things I don’t like to hear about my mental illness

I re worked some of my earlier writing

I used to only disclose my mental illness to a few people because I was worried about the reactions I would get. I had already received negative responses when I had to stop working. But not talking about my mental illness limited my ability to converse. It was hard to think of things to talk about. I was afraid my secret would get out, so I’ve slowly been opening up. And although being open about my mental illness makes me feel free, it comes with a cost.

Here are some of the worst things people have told me after I’ve opened up about my mental illness:

1. “I want the old you back.”

First off, I know I’ve lost a lot because of my illness. Jobs, friends, income, time. I feel that loss. I want those things back, too. But, I’m realistic enough to know time has moved on and I have to deal with where I am now. But, more importantly, I’m right here. I may act strange sometimes or think unusual thoughts, but I’m still the person I’ve always been. Accept me as I am now.

2. “You need to…”

I’ve been given a lot of unsolicited advice. But I’m actually doing pretty well at the moment and don’t need suggestions. But, even when I was more symptomatic, I didn’t need people to tell me what I should and shouldn’t do.

3. “You’re too emotional.”

I’m not sure what that means. I have a mood disorder and changing moods come with the territory. When you point out I’m “too emotional” or “too sensitive” it’s completely unfair. I can’t help how I feel.

4. “You don’t look like you have a mental illness.”

I don’t know what to say to that. I think it’s meant as some sort of compliment, but it negates all I’ve been through and denies something that I know is real.

What I dislike the most is being talked about like I am not even there.

All I expect from others is to listen and be understanding. To treat me like a whole person and not something that needs to be fixed. To feel loved and like I matter. That’s all I need.

Crossing Zones

Travel is one of the greatest dangers facing someone with bipolar disorder. The majority of medical evacuations from overseas happen when someone enters a manic or a psychotic state. I am no stranger to these issues: I have noticed that when I cross the country to attend DBSA conventions, the combination of the excitement of the convention and the messing up of my sleep cycles — especially when I am compelled to wake up earlier — often conspire to pushing me into a slightly manic and obnoxious state.

So when we made plans to visit my brother-in-law in Senegal, I took the time to confer with all my doctors but especially my GP and my psychiatrist. In addition to the necessary shots such as typhoid and yellow fever, we bought medical evacuation insurance for me. I also discussed my plans at length with my psychiatrist, particularly since I would find myself not merely in one different timezone, but four — Salt Lake City, Paris, London, and Dakar. Together, we hatched out a plan which involved my taking an extra tablet of carbamazepine while I was gone. Two days before my departure, I began taking the increased dose — two first thing in the morning, one with dinner, and one at bedtime.

Not even the hint of mania afflicted me. I kept my temper, didn’t laugh too much, kept my bearings, and didn’t engage in compulsive spending. We stuck to our plan in London and Paris, not doing too much in a day and always discussing our expenses as we went along.

When I came back, I felt so good on the new dose — who in their right mind misses the rages? — I asked my psychiatrist if I could stay at that dose. She let me under the condition that my drug and white blood cell levels were closely monitored at least in the beginning to be sure that they didn’t destabilize me. Four months after my trip, I continue to do well.

If you live with bipolar disorder, you can learn this from my trip. First, talk to your psychiatrist and consider raising your dosages of your mood stabilizer. Second, take pains to adjust your sleeping schedule. For two weeks before I left, I starting setting my going to bed time an hour ahead of when I usually woke until I was getting up at Paris time, about mid-afternoon. When I arrived at Orly, I felt fine. When we arrived in London that evening, I went right to sleep and woke up shortly after dawn. I wore a sleep mask and ear plugs to minimize disturbances. I used an alarm clock to wake myself and it worked. I jumped out of bed and I enjoyed each day. My regimen kept my mind stable. My sanity never wobbled.

Cards

I was going through some things, and I found a card from a friend. It was a nice home made card. I don’t remember when she gave it to me.

It got me thinking of my most memorable card. I can’t find it. Probably threw it out. I wanted to forget that time.

When I had babies people were able to visit at pretty reasonable hours. They brought balloons, cards, flowers.

When I was in the psychiatric ward, it was totally different. Restricted visiting hours and limited visitors. No flowers or cards.

They did have different groups and activities where I stayed. I was in an art class and they had us make cards. I made a get well card for myself.

Lori,

I hope you feel better soon

From,

Me

With a design on front

Diagnosis changes

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My first diagnosis was social anxiety. That still fits, but when I started having more severe thought and mood symptoms it was obvious there was more going on.

Originally that was diagnosed as bipolar I. That never seemed to fit well. I would read the textbooks and they didn’t describe me well. I would go on-line or to in person support groups and I would feel like I didn’t quite fit in.

After a long period of psychosis where I had been in different mood states (including neutral) my diagnosis changed to schizoaffective disorder, bipolar type (as opposed to depressive type).

In a way this was a relief. My symptoms fit more neatly. It just made more sense. My psychiatrist told me he had always held that diagnosis as a rule-out, it just took him a long time to decide. Every doc since then has agreed. I was told the prognosis is the same.

It can be scary to have any mental illness diagnosis, but I think anything that starts with schiz can be particularly so. I just want to say that nothing changes with a label. You are still who you were and you can get more focused treatment.

When I was first reading up on mood disorders I came across a set of articles on schizoaffective disorder by Michael D. Crawford. I wanted to scream. this is me. No one cared, because it was a different label than bipolar. But, I went back to it when my diagnosis changed. It had moved to Psych central. I could still relate to it.

That was in 2006. I am sure there are other articles and blogs and some will speak to others differently. I do have a goal to make a webpage like that. Something that might help someone else who is floundering through.

“Citizens Commission on Human Rights”

Here is an organization that some of you may be familiar with.  It’s CCHR, the self-proclaimed “Citizens Commission on Human Rights.”  It refers to itself as a “watchdog investigating and exposing psychiatric human rights violations.”  www.cchr.org.  A review of its web site and claims provides a valuable lesson in prejudices and falsehoods about mental illness, as well as fallacious reasoning.

The group purports to “expose” the harmful effects that the supposedly bogus psychiatric drug industry has on Americans.  They deny the usefulness of psychiatric drugs to millions of people.  Indeed, they deny the very existence of psychiatric illness, as remarkable as that is.  Their web site is full of inaccuracies, distortions and hokum.

Here is a juicy piece from their web site that powerfully demonstrates their extreme ignorance of the uses and benefits of psychiatric drugs:

“Once reserved for the mentally disturbed, today it would be difficult to find someone—a family member, a friend or a neighbor—who hasn’t taken some form of psychiatric drug. In fact, these have become such a part of life for many people that “life without drugs” is simply unimaginable.”

“Mentally disturbed”?  What does that mean?  Would I find that in the DSM?  It’s also not a particularly flattering or respectful term for people with brain illnesses.

An excerpt from their web site incorrectly and disingenuously denies the very existence of psychiatric illness:

“Psychiatric disorders are not medical diseases. There are no lab tests, brain scans, X-rays or chemical imbalance tests that can verify any mental disorder is a physical condition. This is not to say that people do not get depressed, or that people can’t experience emotional or mental duress, but psychiatry has repackaged these emotions and behaviors as “disease” in order to sell drugs. This is a brilliant marketing campaign, but it is not science.”

This is a classic false premise fallacy.  If you cannot “prove” by a concrete lab test or “chemical imbalance test” that someone positively does or does not have a particular illness, it does not exist.  There is no “disease.”  False.  The presence of an illness need not depend upon a litmus test.  Brain illnesses are real medical diseases.  They do have roots in genetics and brain functioning, as well as personal history and other factors.  And they are diagnosed subtly through a process of rigorous questioning and psychological and medical treatment.  Diagnosing and treating mental illness is not as easy as this group makes it sound, but that does not detract one iota from the scientific nature of these processes or the illnesses they concern.

Here is an outright lie:

“Authors Richard Hughes and Robert Brewin, in their book, The Tranquilizing of America,warned that although psychotropic drugs may appear “to ‘take the edge off’ anxiety, pain, and stress, they also take the edge off life itself…these pills not only numb the pain but numb the whole mind.” In fact, close study reveals that none of them can cure, all have horrific side effects, and due to their addictive and psychotropic (mind-altering) properties, all are capable of ruining a person’s life.”

While some medications may cause a numbing effect in some people, it is totally misleading to suggest that all or even most psychiatric meds “numb the whole mind.”  It is even more outrageous to state that “close study reveals that none of them can cure” mental illnesses.  True, many mental illnesses are not “curable” as such, but neither is diabetes.  The point is that these medications help improve the lives of people living with real, devastating, and sometimes life-threatening illnesses.  Millions of people.

Here is a classic guilt by association fallacy:  “Consider also the fact that terrorists have used psychotropic drugs to brainwash young men to become suicide bombers.”  First, the term “psychotropic drug” could mean anything from prozac to heroin.  Just because some criminals or violent radicals use drugs to influence people to nefarious purposes has nothing to do with drugs used to help people.

Here they claim that 78 million Americans are taking psychiatric drugs:  http://www.cchrint.org/psychiatric-drugs/people-taking-psychiatric-drugs/

I have not been able to find the specific source of this alleged study, much less examined the results.  I would appreciate anyone who has a lead.

Here is another “source” that has worked its way around the internet:  “We do not know the causes [of any mental illness]. We don’t have the methods of ‘curing’ these illnesses yet.” —Dr. Rex Cowdry, psychiatrist and director of National Institute of Mental Health (NIMH), 1995″

I see this exact quote on many web sites, with the same brackets.  But I can’t find the full text in which this edited statement occurs.  If I can’t find the full text, I don’t know the context. In any event, even if it’s correct, it’s use is misleading.  We do not know with 100% accuracy the specific roots of mental illness in a given individual.  But science has a pretty good idea of the range of causes for mentally ill people in general.  They include, variously depending upon the individual: genetics, family history, personal history such as sexual or physical abuse, trauma such as the loss of a loved one or involvement in war, other stressors, alcohol or other substance abuse, and other factors.  These risk factors often work in combination.

Do we know everything about what causes mental illness?  No, of course not.  But neither do we know everything about cancer, but that does not mean that cancer is not a medical reality and that there are not treatments for it.  The point is that for both mental illness and many other medical illnesses–including cancer–we know just the tip of the iceberg.  But science is learning more and more people every day.  And it is able to help more and more people every day.

This is all not to deny that there may be some over-medication.  It’s also not to deny that there is a large, powerful corporate complex profiting from pushing all kinds of drugs on people.  But what it does mean that we cannot deny either the real, medical nature of psychiatric illness or the genuine benefit that many drugs do provide for millions of people.

In any event, I’ll finish my screed by pointing out the lesson of all this:  beware of bullshit and the many forms in which it comes.

The Life and Times of the Agnostic Messiah

This is a slightly modified version of the email that I sent to Joel a few days after my most recent psychotic episode.

Hey Joel. This is Misrael. I have some stuff I need to get off my chest, and I’m not sure I’d be great at sharing verbally right now.

For one thing…when I thought I was G-d? I always knew I was Misrael too. About halfway through my stay…I realized I was not the Messiah. I realized I only had the potential to be (this person is called the Moshiach in Judaism). I was yelling about that in the clearest terms I knew how, and yet that shift in thinking is probably not even on my medical records. When I was talking to you in word salad? I knew I couldn’t speak properly. Believe me, I was humiliated. I was also humiliated that I had to beg all day for restraints, and only got them when I started banging my head against the wall out of frustration. I was so humiliated by being on the Ward that I was begging onlookers to rape me. I only felt there might be hope when they started taking me semi-seriously. All I know is that I was closer to losing my identity as Misrael than I was to losing my identity as G-d!

I had a lot more respect for the other patients on the Ward than I did for the nurses. Despite that, I always took my meds. And I’m glad! They shoved meds up this one girls butt. I discussed this with my psychologist. Even she thinks it was unnecessary, considering the circumstances. I told the patient to file a complaint at the time. Most ornery patient on the Ward, and she brought me a cup of water. She knew I was constantly thirsty. I’d get into rages…but I don’t remember being angry…just scared.

So now you have the highlights. What did I learn? That it’s the little things in life that matter. That you don’t have to be a theist to have religious mania. I can’t even listen to popular music without thinking I’m G-d these days! And in some ways, this is normal. In other ways, it’s not.

Love,
Misrael

P.S. You did the right thing where my boyfriend is concerned. I wish you’d put up a poll on Moodswingers so that we could all have a say in whether he is welcome…but what you did was good enough. So thank you.

Working

Sorry, I haven’t written for awhile. I got a job and it has thrown me off my regular routine.

I almost can’t believe I am working. It is part-time, as a peer mentor. They know of my diagnosis and will understand if I have symptoms.

I have only been there for a month. I was excited to get a paycheck. I took my mother-in-law out to dinner. It was nice being able to treat her.

It is really slow right now. We are just getting ready to open. I know it will change. I have a great schedule, but I don’t know how I will adapt to getting going in the morning.

If you have a serious mental illness and have been disabled for many years, there is hope that you can achieve your goals.

I have no idea what the future holds but I really wanted to at least attempt to work again.

Madness in Senegal

I wasn’t able to arrange any interviews. The doctors in the Senegalese mental hospitals were defensive, fearful that I would paint a bad picture of conditions, or busy. The assurances of the State Department staff who were helping me didn’t sooth this naive patriotism or persuade them to give me half an hour, but I learned a little. There’s no social security in Senegal, so the mentally ill either rely on the care of their family or begging. I didn’t see many people who struck me as being afflicted on the streets (unlike London and Paris), so I assumed that they had been assimilated into the crowd and received care of sorts from other dwellers of Dakar’s streets.

The luckier among the mentally ill receive support from their families who send them to mental institutions where they receive treatment in the form of psychotropics. These help as long as the money holds out — a familiar story to those of us who remember the dark days before Obamacare. I can’t tell you about the conditions in the hospitals; so, I don’t know if they followed the best standards of care or if they were dank prisons where patients were chained or locked into padded cells.

Mental illness is recognized even in the more remote and traditional areas, which refutes the myth that people in Africa regard people living with schizophrenia and bipolar disorder as holy. Instead, they are ostracized and feared — as they have always been.

Most of the mentally ill disappear into the mass of people walking the streets of this city. They are ignored and forgotten, their symptoms shrugged off which is not the reverence of the myth makers. There’s rumor of an American in one of the suburbs who is in episode; there is no retrieving him and taking him home, however, because he will not come into the embassy for evaluation.

If I stayed around, I might see more; time is running out, however.

The Flatland Dilemma in Interpreting Bipolar Mania.

People in mania are known for flights of fancy and the rapid association of ideas. Of all the forms of intelligence that we may possess, it is only the ability to recognize analogies and build associations that suffers when we go on mood stabilizers. I think it can be a mistake for outsiders to believe that this ability leads to wild, random, and unusable linkages in our mind. I find that my ability to write poetry — meaningful poetry — suffered after I started taking lithium; I lost insights. Of course, many other more negative traits like my irritability, grandiosity, and racing thoughts disappeared so I consider it a net gain.

The things we bring back from our adventures in mania land aren’t all rubbish. Poets such as Shelley and Byron depended on their manic states to generate compelling material. Some scientists have conceived startling new concepts. Isaac Newton is a classic example of a maniac whose insights transformed the science of his day and enabled him to revolutionize mathematics with his invention of calculus. The trouble comes when we try to bring our insights back from the fine and private place of our sickness.

William Knowland’s Flatland — which was written to explain the difficulties inherent in Faith — presents a useful allegory for our struggle to explain what we have found. Imagine a two dimensional figure, say a square. Imagine that it is you. Your perceptions are limited to two dimensions, so while you can make out one dimensional figures such as lines and points, you cannot appreciate three dimensional ones. If you were one dimensional, squares would appear as lines to you. Angles and other aspects of the square would invisible.

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