N*ts

Am I even supposed to use the word nuts?

This term should not apply to anyone yet I find it can apply to the standard approach to treating schizophrenia.

What I find unbelievable is that in my 28 years in recovery no psychiatrist ever asked me about the kinds of food I ate or exercise I did. Even though for the first six years of my illness I was 20 pounds overweight. I was always the one to initiate talking about these things.

It is an injustice if not unethical that treatment providers like psychiatrists don’t integrate a whole body approach to treating their patients. I’m so inflamed about this that when I talk to Dr. G next I’m going to tell him how I feel about this.

Why don’t:

Psychiatrists ask about our goals for our physical and emotional and mental and spiritual well-being. Does yours?

Why don’t:

Psychiatrists give their patients referrals to a nutritionist.

Why don’t:

Psychiatrists ask us what OUR number-one priority is for ourselves in our treatment.

I kid you not:

What shrink in only a 20 minute session ever truly gets to the heart of a patient’s goals and dreams?

If a doctor has blinders on and only focuses on the medication this really isn’t right.

I had a second doctor I quit seeing after five years. This guy had an agenda to get me to take Risperdal and I told him no,no,no at every session. You can read about this doctor in my memoir Left of the Dial. I’ll post this session in a memoir excerpt in the Left of the Dial blog on Tuesday.

I just think it’s questionable that individuals diagnosed with schizophrenia often get shabby medical treatment. Should I use the term baloney instead? As in: this is truly baloney. Maybe that would be better.

I’ll end here by saying that I want to continue to write about fitness and nutrition in this blog.

In October I will only occasionally freelance at HealthCentral. For the last nine years as the Health Guide at that website I did write about fitness and nutrition. I was in the vanguard because I wrote about things at HealthCentral five years before anyone else was writing about these recovery topics.

I’ll start to talk in here about things I used to talk about at Health Central. Stay tuned.

Therapy

I will be writing in August at HealthCentral about finding a therapist to talk to. It might take a person five months to find a therapist yet you shouldn’t give up. I will link in the news article to where you can obtain free or low-coast healthcare in your city or town.

Health insurance plans often have a provider directory on their website where you can search for a therapist. I can tell you not to rule this option out as a method for finding a therapist. You might even find a therapist this way who has a convenient location and a low co-pay. As opposed to having to shell out $100/per visit upfront like some therapists charge.

Keep trying. I’ve discovered that it might take longer yet you can find a therapist if you don’t quit.

In the coming weeks I’m going to talk about fitness and nutrition again. Stay tuned.

Setting the Bar for Mental Health Treatment

I’m not a model-off duty even though it’s the holiday weekend.

I’ve decided to publish blog entries for this Fourth of July because I don’t want to wait until Monday.

My point is: the bar has been set low for individuals diagnosed with schizophrenia and other mental illnesses. Heck: for too many years the bar was set in the gutter.

More than this: I think mental health services are dismal because in fact the bar was not set at all.

“Business as usual” didn’t work in 1987 when I had the misfortune of being a recipient of community mental health services. Two years shy of 30 years after 1987 business as usual still isn’t working.

Who says most people can’t recover from schizophrenia? Why are the saying this?

It begs the question: “Why aren’t people able to recover?” Placing the blame on the person himself or herself for failing to recover is NOT the answer. In an era of non-existent mental health services the answer is: the mental health system has failed the very individuals who need effective treatment the most.

Where is this treatment? I’m employed at a job and even I can’t get treatment.

A disincentive exists for most people with mental illnesses to get jobs. If you collect government benefits, you can see a therapist at a clinic once a week going on seven years like one person I know does. If you get a job, you’ll have to pay for your own health insurance. Private therapists won’t take insurance and will charge you $100/session.

If you’re a provider or other person who doesn’t think a person with schizophrenia can recover: what exactly do you think we can do with our lives? If you’re a provider who doesn’t think we can recover what exactly are you providing us? Holding our hands and singing folk songs is not helping us. Stringing us along with treatment that is not evidence-based is not helping us.

Not setting the bar is what’s not helping individuals with schizophrenia recover. Bickering over whether or not a person with schizophrenia should take medication is not helping the majority of people who need to take medication to have an equal shot at a better life.

I submit that 90 percent of the people in society haven’t set the bar for themselves or for others in their ordinary lives.

The one way they set the bar is to groom their kids to do extracurricular activities to guarantee they’ll get into Harvard or Yale or other prestigious colleges. Ironically this pressure causes young people to have ill mental health just trying to conform to what’s considered “normal”–acting super-competitive to get ahead of other people in society.

I make the case for setting the bar in terms of the treatment you expect from providers and other people. Expect respect. Set the bar for the treatment you provide individuals diagnosed with schizophrenia and other mental illnesses. Expect that collecting SSI the rest of their lives and living in a dangerous apartment complex on the edge of town: is NOT the guaranteed outcome once they’re diagnosed.

I still can’t say why I had the guts to challenge the staff way back in 1989 when I decided I wanted to get a full-time job and live independently. I can’t say why I had that courage.

I can say that 30 years later the system still isn’t working when a person has to decide between getting government-funded therapy and getting a job.

Universal healthcare anyone?

Reconsidering Schizophrenia Treatment

Define what constitutes schizophrenia treatment.

Is it medication? Therapy? Family support?

My contention is that “treatment” must be inclusive of exercise, an eating plan, acts of faith in God or a higher power, hobbies and passions, work, school, and other healthy routines we engage in in our ordinary lives each week.

I wrote at HealthCentral about getting credentials. It’s my belief that we need to focus on habits we engage in to be whole and well. This is going to be a personal skill set or set of activities for each of us.

The days should be long gone when young people are shunted into traditional day programs, strung along years and years in a way that leads to dependence and disability instead of recovery.

This is precisely why I make the case for broadening what constitutes “treatment.”

I was lucky for over four years to employ the services of a trainer at the gym. I couldn’t afford weekly sessions so I met with him every five weeks to be given a new routine to do for the next five weeks on my own and so on. I achieved my fitness because of this trainer.

The trainer was a special person in my life and I’m grateful for the time I had with him while he was here.

This is why I think treatment needs to be expanded to incorporate at the least fitness and nutrition to help individuals with schizophrenia and other mental illnesses heal.

We can’t always do it alone. We need to assemble a treatment team that is comprised of peers and mentors for support as well as a doctor and therapist.

I wrote at HealthCentral years ago about a depressed woman who checked herself into a hotel with a spa for pampering as a form of treatment.

There you go.

I rest my case.

Changing Minds, Changing Lives

I realize a therapist or psychiatrist has a limited amount of time in an intake to delve into what’s going on in a person’s life.

Yet I make the case for asking thoughtful questions as a follow-up to what the patient has told you instead of making an automatic assumption about what they’re capable of.

This blog entry is my Open Letter to Providers: stop stigmatizing and stereotyping the very individuals you’re in business to treat and to help recover.

If you think a person diagnosed with schizophrenia or another mental illness can’t recover: why exactly did you go into this field if you don’t think that what you do can help others recover?

Do you take great pride in “spinning your wheels” as the saying goes without moving anywhere in what you can do for patients?

I was told I was too low-functioning for therapy. Years later I was told I was too high-functioning for therapy. I was told I couldn’t possibly have schizophrenia. I was told that going into therapy would set me back and jeopardize my recovery.

Four different therapists: four wildly divergent assessments.

If you are a provider, I urge you to change your mind about what people diagnosed with schizophrenia or another mental illness can do. You’re responsible for your actions. If you don’t think we can recover, what do you think we can do with our lives?

Do you really take pride in spinning your wheels when you think no one can recover?

Do you really think stringing us along in endless “treatment” that could lead to dependency and despair instead is the right thing to do?

This reflects on your own self-worth as much as it reflects on your patients.

Take a tip from a doctor who told me: “The only acceptable treatment outcome is total symptom relief.”

Bella De Paulo, PhD in her book Singled Out detailed a research study that bordered on being unethical in my opinion. A teacher was told certain students were intelligent and other students weren’t smart. Don’t you know the results of the study showed that the teacher treated the supposedly intelligent students in a positive way and they got better grades? The teacher reacted differently to the allegedly stupid kids and those kids got poor grades.

Providers have an extra requirement to do no harm to their patients.

Not everyone is like me and is going to champion herself and her goal of getting a full-time job and living independently. Twenty-five years after I dared do that I will always wonder why I was able to believe in myself and think I could do what I set out to do. The reason I was able to speak out might always elude me.

This is why I will not ever place the goal of getting to recovery solely on the actions of the individuals diagnosed with schizophrenia or another mental illness. Not everyone sees a mountain like I did and wants to move it. Most people need encouragement and positive feedback along the way in their recovery.

I’ll end here by saying that if you’re a provider, you owe it to yourself to elevate the status of your patients: in your eyes, in their eyes.

Change your mind and you just might change another person’s life for the better.

Winning

The playing field isn’t level for people with mental illnesses. Whether because of stigma or because of the battles a person fights against their own mind: the playing field is only level when you compete against yourself.

You can win when you choose to compete against yourself. You might even be able to win when you compete against others for a job or a promotion, or a spot on a sports team, or a place in graduate school.

I’m most interested however in the day-to-day: the pockets of time everyone lives in every day. In how we must celebrate little victories as well as milestones like 50.

I make the case for redefining success when in fact the playing field isn’t level.

I urge every parent to love your kid for who they are not what they can do in life. Get a pen and piece of paper and write down every great thing you can think of about your loved one. Try to write down at least 20 positive things you can see in your loved one. Keep on going.

Do this for yourself if you have a mental illness: write down five things each day in a grateful journal that you’re thankful for.

Winning isn’t always becoming a neurosurgeon against great odds. It isn’t always the result of competing with others in society.

In my book winning is as simple as taking action in the direction of your dreams. Winning is one day when you have the energy setting the dining table with a place mat elegant flatware and your best dishes. Winning is getting out of bed.

Winning is when you decide to like yourself even though you don’t see yourself reflected in media stories about successful people.

Winning comes when you accept that you are a great person just the way you are. You don’t have to apologize for your existence or justify to anyone else how you live your life.

Winning is not throwing in the towel. It’s telling yourself: “I got halfway today. That’s good enough. I can try again tomorrow.”

You win when you understand that you can’t do everything and have everything that other people have. You win when you’re grateful for what you ARE able to do and ARE able to have.

You win when you plant the seeds and water the grass in your own garden instead of envying other people’s grass.

It isn’t greener over there.

Each of us must define “success” in our own terms.

That as a fortune cookie stated: “There is no shame in failure only in quitting.”

Winning is making the effort even when the odds are stacked against you.

Winning is trying your best every day knowing that your best will change from day to day.

Winning is flashing a smile to someone who’s hurting.

Winning is tipping a waitress who’s been on her feet 10 hours 20 percent.

Winning is the little things.

Everyone’s a winner in my book.

You’re a winner simply because you try your best.

Tutti-Frutti Treatment

Too often it’s the norm that people are turned away from the hospital doors. They’re sent out into the community where they get sicker and sicker. Then they commit a crime that lands them in jail where they have no chance of getting better treatment.

More and more too community mental health centers (CMHCs) are ill-equipped to help people who are sick. Their recorded messages tell you to go to the nearest emergency room. Where you’ll undoubtedly be turned away.

My experiences with CMHCs have been dismal. From 1987 to 1989, I was shunted into day programs. I had to stand up and shout louder to be given the right to pursue my goal of getting a full-time job and living independently. It was an ongoing battle to be given crumbs from the table that normal people feasted at. I wanted a seat at that table. I wanted to have a better life.

The CMHC staff no one there thought I could do it. You were supposed to be folded up and zip your lip not make waves. I rebelled the role of “mental patient.” I had higher expectations for what I could do in life. My mother too booted my ass to get a job.

Circa 2015 I wonder if this has changed. You’re bounced around like billiard balls from hospital to jail to hospital to jail. CMHCs don’t want to treat you either if you’re sick.

I have the dubious honor of having had a therapist tell me five years ago that she couldn’t treat me because I was high-functioning. I thought OK she could be right. I had gone to her in good faith. Five years later I’m stuck on my own trying to get help and once again I have no hope of getting help. Waiting lists exist that are a mile long or else there are no appointments and no waiting lists at other agencies.

In 1993, I was told I was too low-functioning for a therapist to treat me. Three weeks after that, a therapist told me I couldn’t possibly have schizophrenia. “You can join my group but don’t tell the others you were in a hospital.” He imposed a gag order.

What’s up with this tutti-frutti treatment?

More likely it’s rocky road trying to get help.

The mental health system is dysfunctional.

Good luck getting help when you need it.

This is why individuals get worse because their situation magnifies into something unmanageable.

Left untreated, or left without treatment for too long, a person has a snowball’s chance in hell of having an easier time of it in life. Everything they want to do could be a battle. Nothing will come easy.  The Internet abounds with stories of bloggers whose lives are enduring hell because they didn’t get the right treatment as soon as they needed it.

I want that no other human being should live in this kind of hell. I want that no one who needs help and seeks help is turned away. I want that everyone has the equal opportunity to succeed.

Mental Health Agencies Asleep At The Wheel

I did not have a good experience with a community mental health center because the one I was involved with for 3 1/2 years was ill-equipped to help a young person like me that had so much potential for what she could do in life.

After I came out of the hospital, I was shunted into “transitional” programs that led to dependence and disability instead. I fought to be taken seriously in my goal of obtaining a full-time job and living independently.

It’s why I’m not a fan of most community mental health centers.

And Rep. Tim Murphy released a report slamming SAMSHA, the government agency, for not doing anything to help individuals with serious mental illnesses. The funds given SAMSHA couldn’t be accounted for. There was no proof that anything SAMSHA does helps those of us with severe symptoms.

In reality, staff at SAMSHA are against treating people with medication. Its funding goes to agencies that advocate for people to refuse the treatment that can help these individuals be in remission.

Here’s the results from the Treatment Advocacy Center press release:

“The GAO (government General Accounting Office) identified 112 programs spread across eight federal agencies with combined budgets of $5.7 billion in 2013 that might support individuals with serious mental illness but only 30 targeted specifically for this population.

• Of the 30 targeted programs, fewer than half had been evaluated or were scheduled to be evaluated. As an example, a multi-agency committee established to improve coordination for such programs has not met since 2009.

• Few agencies were found to be tracking or evaluating their programs for serious mental illness, and many were unable to say how much money was actually being spent for the target population or if individuals were actually participating in such programs.

‘This is a stunning independent validation of what we been saying for years: The people who need help the most are being neglected by the federal agency responsible for ensuring they get help,” said Doris A. Fuller, executive director of the Treatment Advocacy Center. The GAO found that of the 30 programs specifically targeted for individuals with a severe mental illness, most of those were in agencies like the Veterans Administration and Department of Justice, whose missions don’t include mental health.

The report was prepared in response to a bipartisan request from subcommittee Chairman Tim Murphy (R-PA) and Ranking Member Diana DeGette (D-CO). Subcommittee members heard testimony at a series of hearings exposing a systematic pattern of focusing federal dollars elsewhere than on those with the profound psychiatric diseases such as schizophrenia and severe bipolar disorder. This population, estimated at 10 million by the GAO to include individuals with severe depression, is at significantly greater risk for homelessness, arrest and incarceration, suicide, homicide and a number of other negative results when they do not receive treatment.

‘The Oversight subcommittee wanted to know whether the needs of society’s most vulnerable citizens were being addressed by the federal agencies charged with meeting those needs, especially SAMHSA,’ said Fuller. ‘The GAO found they are not.'”

Getting Effective Treatment

This blog entry is devoted to getting effective treatment.

Those of us who are able have the duty to dialogue with our treatment providers to decide together on the best options to treat the symptoms we have right now.

Those of us who lack the ability, because of a symptom like anosognosia, might not believe we have an illness because of this lack of insight.  In this instance, I side with family members who try to get their loved ones treatment.

Either way: I’m confident when I tell you that you can’t go it alone if you want to succeed in life as well as in your recovery.

You will get the most effective treatment when you allow your providers to talk to a family member like your husband or mother or a trusted [key word: trusted] friend.

It’s always possible to cross over a line where the symptoms return and you’re not aware you need help.  Having a family member or trusted friend step in to get you help could be the difference between having a continued successful life and recovery or reverting to having an ongoing challenge.

I will talk in Thursday’s blog entry about how family support made all the difference in my own life.