Is “High Functioning” Stigmatizing?
Posted on May 8, 2015 in Civic Responsibility Stigma
Some advocates for the mentally ill think we are doing too much for “high functioning” patients. “High functioning” is not, as far as I know, a word that anyone with a mental illness applies to herself, but is a label affixed to our records by social workers, other mental health workers, and bureaucrats. It signifies that the person in question is able to care for herself without assistance from caretakers or government programs. For the patient, it feels like a kick in the pants and, like most stigma, is based not on how the patient feels but on an outside evaluation that culminates in a “I know what is good for you better than you do” prescription.
A speaker at a DBSA conference that I attended some years back described what happens when a person is labeled “high functioning” too soon:
What concerned [George Nostrand] was the cycle that the mental health system thrust its clients, whereby they were only managed in the event of crisis and until they were just self-sufficient. Once stabilized on the needle’s point of what bureaucrats fobbed off as recovery, the state abandoned these people when they were still fragile. When the client faltered, agencies blamed lack of resolve on the part of the health consumers and/or the care providers for the failures. Nostrand contended that agencies should not merely aim to have their clients mere self-sufficient but thriving in the face of the challenge of the illness.
Lost And Desperate
Posted on May 7, 2015 in Anxiety Psychosis
I am going insane. Every day, I feed Boadicea from a cat food scoop that I keep in her food bag. We have had this scoop since the mid-1990s. It goes in the same place every time one of us uses it and these days that person who puts it there is me. Yesterday, I went to feed her and it wasn’t there. I looked all over the kitchen, on the desk, upstairs, and could not find it. Where had it gone? Where could I have transported it to?
I cry at the top of my voice and revisit all the places the damn scoop could be. But it is not there, it will not be found. Lynn doesn’t understand how upsetting this is to me, how it makes me feel that I am starting to lose it all. She won’t let me suspect that some cruel person has been in the house stealing small but vital things, but where is the explanation?
I am tempted to set up a spy camera to see if someone has been in our condo, but that’s getting a bit paranoid, no? Tonight, the measuring tape that I use for my waist went missing. Again, it always goes back in the same place. No sign of it anywhere. These small things are measuring up to be a lot and I am wondering if they will push me over into the darkness. What is happening? What is my mind doing to me that keeps me from finding these simple things?
What is Stigma?
Posted on May 6, 2015 in Accountability Bigots Stigma
The Devil is not the Prince of Matter; the Devil is the arrogance of spirit, faith without smile, truth that is never seized by doubt. The Devil is grim because he knows where he is going, and, in moving, he always returns whence he came.
Umberto Eco
Let me start out by stating that I do not believe in “self-stigma”: I believe in guilt, shame, and despair but labeling these as “self-stigma” cheapens the meaning of stigma. There may or may not be a motive behind the invention of this term, but the result is that it implies that the people who are the principal victims of stigma are in a conspiracy — or confederacy if you prefer — against themselves.
To further explain what stigma is and isn’t, let me use a parallel that was laid out to me by a friend who was explaining certain terms used to describe race relations. White people often accuse African Americans of being racist, too. African Americans dispute this. My friend — an African American woman — acknowledged that African Americans often hold deeply seated racial and ethnic prejudices. But this isn’t racism because racism requires another element: power. White Americans are in a position to make their racial prejudices inflict suffering on the lives of African Americans. Witness, for example, the unwritten DWB (“Driving While Black”) policies of certain police departments including “America’s safest city” (for white people) Irvine, California. The policy is enforced when a black person drives through the city of Irvine. Because of their skin color, they are assumed to be up to no good and pulled over for some minor infraction. The result is that they are made to feel unwelcome in this college town. That is a ~comparatively~ “mild” example, but American history is rife with other exemplars up to the present day.
The Sickness of May and June
Posted on May 4, 2015 in Body Language Depression
I wake up feeling like crud. A perpetually incipient headache — an abrasive cloud leaking through my scalp — lies heavy on my neck. How I hate the gray days of late spring! They bring me down not only into a depression but into a strange, achy malaise that returns me to my bed with a foggy head and a vague stomach ache that doesn’t quite reach into nausea. That’s the nature of this maddening and invisible illness: it doesn’t quite develop into anything — not a headache, not vomiting, not a full-blown depression, not a fever. No pills cure it. Sleep isn’t possible. I just have to bear it until the sun comes out in July. Curses on the May Disorder. Curses on June Gloom. Sixty days before it passes. Sixty not quite miserable, annoying days.
An Apology to Those Living with OCD
Posted on April 30, 2015 in OCD Stigma
It is hard to have a southern overseer;it is worse to have a northern one; but worst of all when you are the slave-driver of yourself. — Henry David Thoreau
I need to stop talking about my “OCD”. When do I label myself thus? When I do make sure my desk is orderly every night or make checklists or avoid stepping on cracks or squeeze every last drop of toothpaste from the tube or proofread my blogs before I publish them or correct them after I have published them. It’s a cheap use of the term and it belittles those who actually suffer from the illness.
Many people do it. They have no clue about how it screws up the life of its sufferers. OCD isn’t just a few quirks but it takes over entire lives. I know people who have to touch every door knob in their house before they go to bed or repeat certain phrases over and over again or have their food arranged in a certain way on the plate — they can’t eat it otherwise. Some clean until the floors in the house are badly scratched and carpets are frayed from excessive vacuuming Others hoard. My dentist hygienist tells me that she is always telling her clients with OCD not to brush too much; their excessive efforts wear out the enamel on their teeth and tear up their gums. Its sufferers don’t perform their rituals for pleasure but to avoid punishment by the disorder such as extreme anxiety and sometimes panic. One sufferer described it to me as having a lattice of borders in his mind that he dare not trespass upon.
So I apologize for trivializing the term. It is bad enough to have the disease. No one should have to bear with a stigma that makes light of a serious problem in their lives.
Carb Cravings
Posted on April 28, 2015 in Body Language Eating Psychotropics
The first few hours of the day, after I have taken my Vyvanse, are fine. I eat by a plan, watching my food intake. The hours pass and then night falls. I have dinner. Then the stimulant wears off, the anti-psychotic Risperidone holds sway, and I want every bit of snack food in the house: Chips, rice cakes, popsicles, jerky, raisins, chocolate, tacos — whatever I can get. This goes on until I force myself to stop by brushing my teeth which I make as late as possible because the cravings are strong. I check my blood sugar, despair at the result, take Glimeperide to awaken my pancreas, and go to sleep until I rise again and repeat the cycle.
Seventy pounds came off over the last three years. I have put twenty five of them back. My famishment bounces hard off my belly. I still exercise — I’ve added set backs and sit ups — and my heart is in amazing shape. But my pants are getting tight again and my shirts come unbuttoned at the navel. Oh to be rid of these infernal hungers!
So I am making a plan: do what I did to lose weight before. Eat right is the most important thing I must do: avoid the sweets and the snacks or count them carefully. Make myself exercise every day. Write down everything I eat. Ignore the fury of my appetite.
What helps is the simple reminder that I have done it before. The strength is in me. I will find my way to a smaller waistline again.
Helicopter Caretaking
Posted on April 27, 2015 in Anxiety Caretakers Suicide
Backseat drivers think they are keeping the streets safe. They watch every move the driver takes, warn him of dangers that he does not seem to see. I can understand where the fear comes from. When you sit on the passenger side, the road looks different. You appear closer to the cars on the right, closer to the curb. Because you do not have control over the steering or the brakes, you fear that the driver will not see the hazards and a crash will result. I have to admit that I am not a good passenger at times and neither is my wife. I criticize her most often for being timid about making lane changes. She makes a noise between a groan and a sigh when she thinks that I am about to run into something. Do we save lives by this? Studies in Iceland and Great Britain say no, we make things worse: “The ‘Driver Distraction’ study, commissioned by esure car insurance revealed that 14 per cent of motorists have had an accident or near miss due to being distracted by a back-seat driver,” says a Daily Mail article. An article in the >LA Times enumerates some of the behaviors:
Biggest driving pet peeves: passengers who make melodramatic facial expressions or gestures; riders screaming about something the driver is already aware of; hearing complaints that they are driving too slowly.
Helicopter caretakers are the backseat drivers of the health care world. They don’t trust us. The origin of their fear is understandable: they have seen us at our worst. But with this comes a certain stigma, the belief that we are unable to take care of ourselves and recognize when our disease is getting out of hand. One case in point is the experience of a patient who spent part of the evening talking on the phone to a friend. The conversation got lively and he laughed and joked with his friend. His father kept coming into the room. “Are you all right, son?” The son soon had enough of this and rightly told his father “Dad, I am allowed to laugh.”
Stigmatizing Synonyms for Mental Illness
Posted on April 25, 2015 in Mental Illness Stigma Vocabulary
I started this list in my head just before I took an afternoon nap. The urge to complete it was so strong that I dreamed additions to it. I do not pretend that it is the last word on the subject nor do I endorse the acceptability of most of them, but I have taken several days to compile it. If you want a list of stigma terms, this should be a good start.
We Should Stop Using Mass Murderers as Our Poster Children for Change
Posted on April 23, 2015 in Privacy Stigma Violence
It’s going to happen again with the same reaction by the media. Maybe we will wake up tomorrow morning and see the report in our morning newspaper; maybe we will hear about it from a coworker at lunchtime; or it will be the lead story of the evening news. Mass murder. Mentally Ill Man. The words will be slung together and dished out to a public which has been bred to believe that mental illness and violence are strongly correlated. Politicians, doctors, family members, and activists will devise plans to cope with the problem. It happened with the Virginia Tech shootings, it happened with the recent Germanwings crash. Autism, bipolar disorder, depression, and schizophrenia have all been implicated at one time or another. The mentally ill cannot be trusted, goes the drumbeat. Schizophrenics and bipolars are killers.
Statistics show that about 3% of the mentally ill are violent. We are ten times more likely to be the victims of violent crime than perpetrators. Yet when we are portrayed on television or the movies, sixty percent of the depictions commit crimes, especially violence. So coupled with the way news outlets spin stories about mass murder, the general public believes that we are ax murderers and serial killers.
Some reformers use this fear to drive some very specific agendas, namely destruction of our rights to privacy, forced medication, and the resurrection of mental hospitals. The objective is to control the mentally ill. They might argue that this is the best we can get in a society with our values, but that is a weak defense of some very problematic and questionable policy changes.
Accountability and the Grim Facts of Depression
Posted on April 22, 2015 in Anxiety Attitudes Compassion Depression Guilt
The black spiral literally knocked me off my feet. I decided on my own to stop taking Geodon — a horrible drug that left me dizzy for all but the last three to four hours of my waking day — and I crashed and crashed hard. My bedroom was my habitation; my cats my constant companions. I felt the after effects for months — a dimness of the world, a heaviness on the brain, and difficulty forming thoughts. Shortly after I emerged from more than a week of never moving from the bed, I wrote:
I count nine days of nothing but turning on my bed, sleeping on the best of them, just clutching blankets on the worst. I run back and forth writing, thinking, and hiding under the covers for this one. That’s my activity and I need to make more. I’d be at the gym working out except I took two Ativan and do not wish to risk the drive. And it is too hot and unshaded for the walk around the condos that I have made my regimen.
Coming “back” implies seemingly ridiculous victories. Today you brush your teeth. You take one less Ativan. You go for that walk twice at dawn like you should. You write in your journal. You blog. All in between visits to the bed, your teacher and your protector.
Just yesterday, I heeded studies which suggest that spirituality helps those suffering from depression and mixed and remixed the books next to my bed until I found a pocket Buddhist companion. This (translated into the objects of depression) made sense to me:
I am not my depression. My depression is not me. The world is not my depression.
This doesn’t say that I lie under the covers for not discernible cause and it doesn’t say to stop taking the meds as appropriate. It simply separates my disease in the same manner as one might separate the eye or the ear. My eye is not me. I am not my eye. My eye is not the world.
We get into an ownership thing in Western thinking — if not throughout the whole world. We own our body parts and our diseases rather than seeing them as causes. They are neither separate of us nor part of us. They are facts.
This gives me personal relief from this nine day good-riddance if rid of it that I am. And I’d rather not talk more about this. It makes sense to me.
Facets
Posted on April 17, 2015 in Depression Mania Memory Reflections Stigma
This began as an unfinished draft that I discovered when I was cleaning out my database. It is an exercise: to take a subject — my illness — and speak of it in many different ways. I have included discussion of Illness Past, Illness Present, and Illness to Come because I am a sequence of events. There’s no order, however, except that which I have come upon through hunches.
A friend — one friend — tried to call me while I was in the hospital. Afterwards, we spoke on the phone some. Then Lynn and I met her for dinner. She and Lynn talked and talked. I didn’t know what to say — I felt ashamed of what I had become, a man who lacked hands that could cast forth stars. So I sat at my end of the table, sipping my glass of clear water and eating my pear and Gorgonzola pizza. I didn’t misspeak because I said nothing. And this friend hasn’t returned my calls ever since that night years ago.
For a time, my psychiatrist had me taking Depakote (known to some of us as “Depabloat” because of its obesifying properties) to stabilize my moods. Shortly after I went on it, she called me to see how I was doing. “I’m feeling great,” I said. “Provided I get 16 to 18 hours of sleep each night.” She took me off of it.
Why I Avoid Quaker Meeting: A Bipolar Man Explains
Posted on April 16, 2015 in Exuberance Mania Religion
The door to the meeting room closes and everyone shuts her eyes, puts her hands in her lap, and tries to bring the silence of the room into her head. This is not meditation, this is listening — listening for what is called “the still small voice”. It is not conscience, though it is kin to it. The people in the room are seeking to make contact with — depending on whether they are Christian or not — the Holy Spirit or simply the Spirit or the Light. Sometimes one of them feels a rumbling inside. Words begin to come together. He rises and speaks to the rest of the congregation. Words of comfort, words of insight into the sufferings of the human soul flow through the voice into the ears of the congregants. The Light infuses these messages with a powerful optimism — a sense that all humans are ultimately good and capable of being reached. Other times, the words speak to “concerns” that the Friend feels need to be brought before the Meeting. Sometimes he thinks he has been led by the Spirit to witness in the world by undertaking a project that will help others.
In 1992, I sat in one of the chairs of Palo Alto Friends Meeting and thought I had such a leading: I was going to former Yugoslavia to help the peace movement communicate with the outside world. I managed to convince a clearness committee that I was sincere. This let me use the meeting as a place to collect money for my project. For three months, I lived in Croatia and visited other countries including hostile Serbia — meeting locals, watching events, and writing about my experiences. Upon my return, I spoke about my struggles. Two years after my return, I admitted to my wife that I was suffering from depression and sought psychiatric help. Eleven years later, I found the right diagnosis (I knew because the medications eased my discomfort with the world) which was bipolar disorder.
