The Stigma of Co-Occurring Disorders

 

Originally published on Psych Central
https://blogs.psychcentral.com/triple-winner/2017/03/the-stigma-of-co-occurring-disorders/

There is a great deal of stigma attached with both mental illnesses and addictions. That is one reason I talk about my experiences. So, others won’t feel alone, and, to put a face to these conditions. It is scary to get a diagnosis of a life-long mental health condition that all you have heard are extreme negatives. People can lose hope. And, people fear what they don’t know.

I also have shame, or self-stigma. I have worked on accepting the schizoaffective diagnosis and at this point am okay. There was a time when I felt, less than, because of the severe symptoms. Now, I know I could not control what happened in the past, and just work on staying stable.

Social anxiety is something I contend with daily, and I cannot seem to prepare enough. I don’t know if I can ever accept how limiting it is for me. There are some things, like volunteering at my children’s school events, that are just too busy for me. I cannot enjoy shopping or parties, I just want an exit. I have worked very hard on this and work with people now and even do public speaking, but it is difficult.

The alcohol addiction label is new to me. In the program I am doing, SMART Recovery, they don’t give labels. But, I need to call it something. The drinking is not new, just the acknowledgement.

There are choices of programs for changing addictive behaviors. Some people work more than one at a time. This was just one that seems to fit my philosophy. It uses cognitive behavioral therapy (CBT) principles and I already learned some of those for my anxiety.

I haven’t had serious consequences from drinking. No DUIs or jail time, No relationship problems. But, I drink more than I would like  and it is hard for me to abstain completely.

I decided I would like to write about the alcohol component along with the mental illness. So many of us have co-occurring disorders. I was excited, and then, I paused. What will people I know think when they see ‘alcoholic’?

I couldn’t decide which was the worst of 2 stigmas. It doesn’t matter.

Info on SMART Recovery
http://www.smartrecovery.org/

Info on Alcoholics Anonymous (AA)
http://www.aa.org/

An external change: The War Inside

In 1992, I went to former Yugoslavia to help the peace movements there instead of getting another soul-ripping job as an administrator. Twenty five years later, I still wonder if I did the right thing, if I did any good in the world. I wrote about my experiences in the way that I like to write, walking around what I saw and thinking about what it meant. People wanted me to go back, but I raised money for the peace groups so they could have offices, supplies, and the like. It did not seem right for me to finance any more “vacations”.

In the end, I never went back. I fell into a depression that lasted for nine months before I had the faith and the courage to admit that I had a problem. I turned to Lynn and said “I’m sick.” Sickness had not begun that day or that year. It had been with me a long time. It was like the guns booming and the machine gun fire I heard in Croatia. Loud. But I could ignore it. Background noise. My illness was background noise that I could shove aside. But the booms never stopped the war inside kept raging, and there was debris all over the streets of my inner city. I wasn’t going back to Osijek. I had a new form for my illness, a new, sick metaphor.

Trusting Your Moods with a Mood Disorder

First published Psych Central

https://blogs.psychcentral.com/triple-winner/2017/03/trusting-your-moods-with-schizoaffective-disorder/

I have a thought and mood disorder called schizoaffective disorder. It is similar to bipolar disorder, in that I have mood swings with periods of mania and depression.

When I was treated for my first severe manic episode I was heavily sedated and slowly titrated down on the medications. When I got to a dosage where I was no longer sedated, and my symptoms were under control, I started to feel okay, good even.

 

It scared me. “Would I feel too good?” I voiced my concerns to my psychiatrist and he reminded me I usually have other symptoms that precede mania. I think most people do.

You could go through a list of symptoms and see which ones are typical for you that would be noticeable.

Do you spend a lot of money?

Are you impulsive?

Do you talk fast?

Do you start lots of projects?

A lot of people monitor their sleep. I often have trouble with insomnia, so that isn’t a particularly good indicator for me. One thing is that I get irritable. I am usually pretty mellow, so if I start snapping at people that is a good sign that something is off. My psychiatrist also told me if people are looking at me strangely that is a warning sign. I am not sure if he meant I do strange things or I get paranoid, which I do, and get suspicious.

Isn’t everyone entitled to an off day, though? Sometimes when I am upset at someone, it is for a good reason. A lot of people imagine others think poorly of them, once in a while.

It would help to have someone I trust, tell me if I didn’t seem right. I have trouble with trust, though, when I am symptomatic. I think everyone else has the problem and I am fine. I am working on that, because I know it is important. Otherwise, you can have a great list of warning signs, but deny them. “I’m not talking fast, you are just listening slowly”.

Once you notice these warning signs, what do you do? That is a million dollar question.

This is where it is best to consult with your doctor and find out when they want you to contact them.

It is also good to come up with a  Wellness Recovery Action Plan (W.R.A.P.) to prepare.

It is good to catch things early, but you don’t want to be worrying every time you have a bad, or good, day.

My Family History of Mental Illness

I remember my grandmother in her baggy dresses that covered every inch of her body like the shrouds that covered the furniture when the summer folk had left for the season. My cousin Heidi was surprised when I told her that my grandmother — her aunt — had spent many hours of each day lying in bed.

“But she was always so jolly, so friendly.”

“Yes,” I said. “She could be like that. Like so many of us she knew how to fake happiness.” I do not mean that as a slander. I admire how she could pull herself together despite her suffering and be there.

I know my grandmother loved me. When I was young, she used to get in big fights with my mother for the way she mistreated me. The rows were long and loud — I would go to the very back of the yard so that I could not hear them.

My mother had her own problems: there was a deep-seated meanness in her. She disparaged my grandmother when we were alone together, complaining about what she thought as Stella’s laziness. When I was depressed, she was panicked at the thought that would do the same, so she hectored me about getting a job — any job — no matter how inappropriate or soul-killing it was. Once, when she was in the hospital with roof-busting high blood pressure, I told the doctor about our family secret. A psychiatrist prescribed Prozac. For three months, she was a nice person.

Where are you in “recovering” a life that is meaningful to you?

The biggest loss after I was diagnosed was my poetry. Before my diagnosis, I wrote a lot — I filled a ring binder with it. Two inches of verse, mostly free. Then I stopped because I believed that going to readings and writing it made my condition worse. And I believed that I lost the ability to write it. I did not stop, but my output was meager and sparse. One poem a year. Some years I wrote nothing. But a part of me yearned for the truth and beauty of a fine image. So last spring, I conducted an experiment. Thanks to a psycho-stimulant that gave me a renewed ability to focus, I cautiously began to compose free verse and haiku. To my joy, I did not explode into mania. I was not writing long intense blogs as had been the signature of my mania and I did not lapse into consequent depressions. So I have begun thinking: If I can handle poetry what about spirituality? Could I attend a church without turning into a prophet? Could I handle being a member of a congregation and not its priest? So I have been contemplating where to go, what denomination suits my temperament. That is the next signpost.

Reminded of Algernon

1 Comment

Not sure what triggers so proceed with caution

I have 3 brothers and 2 sisters. I used to have 4 brothers. Pat passed away over 30 years ago. For a long time I didn’t speak about him. Everything upset me too much. I speak some now. But, it is I sad story and I don’t want to discourage people. Different times, different people.

Pat had a breakdown at 20 when he was at college. He came home a different person, first he would just stare. Then he was obviously mentally ill. He claimed he had been brainwashed by a cult,.he was also the soccer player Pele’ and other people. He was unpredictable and scared me. He would try to act ” normal” mimicking others, which was even worse. My father felt Pat could just stop it if he wanted and would yell and even hit him.

my father didn’t believe in mental health treatment and the only help my brother got was when he was picked up on 72 hour holds. They would give him typical antipsychotics, this was the late 70s, and send him home. He would be psychotic and sedated which just made his differences more apparent.

then, in 1985 he was picked up in a different county. They tried a different medication. lithium. Everyone told me he was back like his old self again. It was as close to a miracle as I could imagine. But, when I went to visit he wasn’t well. He was looking at me suspiciously. He was talking about the bible excessively and was hard to understand. My mother said they were having trouble finding the right dosage.of medication.

he took off that night. I never saw him again. He went to Yosemite. He fell at a large waterfall and died. Suicide or risky behavior? I am not sure.

I have all kinds of mixed up feelings. Mainly guilt. That I didn’t try to understand more and be closer and not so afraid, that I didn’t do more to get him some kind of help, that I am fine and he wasn’t.

and just sad that he was fine for a little while and then started to go back into the psychosis he had been trapped in for years.

(About how the title: my children were talking about ” Flowers for Algernon”. I know the story is about intellectual disability, but the idea of improving and then going back to the old state hit me as similar and sparked the memories)

 

A Letter to My Illness

You moved in when I was very young, shoved me into your corner, made me cry and when I cried you caused the kids to laugh at me, taunt me saying “Don’t cry Joel.” Sister Annette told me to buck up, to learn to be a man and hold the tears back. Damn you and damn her. I couldn’t say it at the time. Two years of living under the threat of her ruler, but the taunts were worse, hurt worse. The more they called me names, you and my parents reasoned, the stronger I would become but this practice was flawed. I played alone or with other losers. My mother criticized my choice of friends, calling them slow, hinting that they were retarded. Even among them I lived in a shell and the kids continued to wear at my head, trying to produce the streams of salt water they loved so much to see. I don’t know what brought you to make a home in my head. I don’t know why you made me sensitive to the twist in their voices. Was it the arrival of my two cousins who stayed for a year? If it was, you stayed beyond a year, brought me suffering. I looked at Jesus and wondered what was worse: crucifixion or this hell I was going through? If I was on the cross with Him, it was an absurdity.

The Day of My Diagnosis

This is the text of a speech I delivered on September 22, 2016

Twenty two years ago, when I was almost thirty six, I woke up one morning and said “Lynn, I’m sick.”. I had been in bed for weeks. I’d lost my appetite. We made an appointment with the psychiatric department at Kaiser Redwood City and by the end of the following week I was on Prozac.

Prozac was amazing stuff: I was cured the next day. My psychiatrist was surprised but because i had never told him about my other symptoms — the irritability, the paranoia, the rapid speech, that time in college when i had gone up to San Francisco with my girlfriend and come back with my girlfriend and they were two different people — he let things be. In time, our insurance changed, so I came under the care of a nice gentleman in Menlo Park who also had no clue about my other symptoms so he made no changes. Then we moved down here and I found a new psychiatrist who also made no changes because I never told her about my other symptoms either.

Then one day the Prozac stopped working, so she changed me over to Effexor. I found myself in a burning darkness. Two things happened. First, an editor was taking forever to get back to me on a story. Second, I overheard Lynn saying something about me to her sister. My irritability merged with my despair. I went for a walk in Whiting Ranch, called a friend — who found my anxiety funny for some reason. So I texted my last will and testament to Lynn, making special note to leave some possessions of my father to my nephew and asking her to be sure to be sure to get my poetry published after my death. Then I sat down on a sycamore log, studied my veins, and prepared to bread my glasses.

My cell phone rang. It was my psychiatrist. “Are you all right?”.

“No,” I whimpered. She told me to go down to South Coast Medical Center. Lynn picked me up and drove me to Laguna Beach

After spending several hours in the emergency room getting my chest x-rayed because I was wheezing, they took me down to the behavioral unit where I left Lynn at the door. They took away my shoelaces and my glasses, then showed me my room.

I came out after an hour. “I am diabetic,” I yelled. “I need my blood sugar medicine!” I can only imagine what was going through their minds — “this guy was brought here because he was preparing to commit suicide and now he wants the medicine her takes to keep himself alive” — but I am sure they took careful notes.

The next day when i went to group i was the happiest person there. Everyone was miserable except for me who was laughing at the fact that he had attempted suicide and lived to tell about it.

After group, I waited around until I was called into a consulting room. A psychiatrist joined me there. He took a few minutes to read over the notes the ER doctor and the nurses had made. Then he looked at me and asked in a very gentle voice “Had anyone ever told you that you were bipolar?”

And that is when my recovery began.

Jargon

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Maybe we are so accustomed to familiar jargon, we don’t recognize symptoms if they are described in other ways.

I was having some symptoms. I have been doing well for a long time and they frightened me. I was hearing my voice (not a hallucination) but it was repeating the same words over and over. Nothing scary, more like I was rehearsing lines.

I was also starting to mumble the words I was saying. I found that listening to music was good because I started saying the song lyrics and that was better.

I would try to explain this to friends, hoping they would sympathize, and maybe give me some tips to deal with it. Instead they would say things like, “Oh, I’ve done that before” and shrug it off like it was no big deal or “Maybe you are talking to yourself because you are lonely”.

Instead of helping I ended up frustrated, leaving wanting to bang my head against a wall. It was hard. I knew they were trying to be helpful and maybe normalize my experience, but I found it invalidating.

And the more anxious I would get, the worse the symptoms would get, the more anxious I would get and it snowballed. My psychiatrist seemed to understand what I meant and made some changes to my medication. Now, it is getting better and I am getting calmer and it gets better and the snowball melts.

Recently I saw another friend. I told her I hadn’t been doing well, some thoughts. She said “racing thoughts?” I thought, that is the closest thing to what I am trying to describe, so I said “yes”. Finally I found a friend who could somewhat understand.

What Does it Take to Make a Diagnosis?

There are a couple of people who sometimes respond to my threads who don’t like it when I say we shouldn’t be calling people mentally ill just because we don’t like them or act in ways that we don’t like. I think it is time for me to outline what is required to make a diagnosis:

  • You have to be trained as a psychiatrist or a clinical psychologist. (Most “experts” or the “peanut crunching crowd” are not.)
  • You have to have actually examined the person. This goes beyond watching them on television or reading about them in magazines or newspapers.
  • You have to use proper diagnostic criteria.
  • You must be neutral. Most of the pseudo-diagnoses that I have seen fail magnificently on this score. In my experience, progressives are the worst, but this does not exonerate others including conservatives.
  • You must have the patient’s welfare in mind, not an opportunity to insult.
  • You must avoid stigmatizing people with mental illness who are not anything like the person you are diagnosing. E.g. By saying that terrorists are mentally ill, you are implying that people who are mentally ill are like terrorists. (Research shows that people with mental illness are less likely to be violent than the normal population.