This SharePost inaugurates a new round of news articles geared to sharing techniques with everyone that can help us live life well even with a diagnosis of schizophrenia.
“Recovery Strategies” will be the theme of the ongoing series focused on imparting both the wisdom and the kind of best practices I’ve learned and used in my 25 years of recovery.
Starting out, I want to revisit the topic of how to effectively manage negative symptoms and self-stigma for both family members and those of us directly experiencing this.
The summer 2012 issue of SZ magazine featured an article about why tough love doesn’t work with a person who has schizophrenia. Telling a person: “Don’t be stubborn, take your medication” is as unhelpful as telling your loved one: “Stop hallucinating.” A lack of insight that you have an illness is a bona fide symptom.
Negative symptoms can also be a challenge for family members whose loved ones lack the motivation to get out of bed or set goals. One sister would be a cheerleader instead and march into her brother’s room and tell him: “Don’t be ridiculous. Come on now”
As I read the article about the perils of tough love, I wanted to get some questions answered about this. I wrote a SharePost on Schizophrenia and Negative Symptoms in April and decided it was time to revisit the topic in a unique way.
So I asked Dr. Xavier Amador, Phd (author of I Am Not Sick, I Don’t Need Help, Vida Press 2010) about whether these symptoms are a permanent, life-long condition of the schizophrenia and how long it can take to see a reduction in their effect.
According to Dr. Amador:
"Some negative symptoms seen in persons with schizophrenia are actually not stemming from the illness and instead are caused by depression, medication side effects or demoralization. These “negative symptoms” will improve along with improvement in the underlying problem. But negative symptoms of schizophrenia tend to remain mostly stable over time.
That said, sometimes medication and time itself can lead to improvement in a minority of sufferers. Knowing when someone is experiencing negative symptoms is important so that in your communications you are not confusing the person with the illness (e.g., Why are you so lazy? Don’t you care? You should at least try and make friends!)."
I will speak to the idea of getting demoralized because you have schizophrenia. The term for this tendency is self-stigma and it happens to a lot of people upon hearing this diagnosis. A pervasive sense of despair can also be brought on by our providers who might have a dim view of what we can do living with this illness.
Early on in my recovery, I had the rare ability to challenge those in authority in the mental health system to fight for my goal to get a job and live independently. I wouldn’t quit until I achieved both things. I faced a lot of resistance from the staff at the day program and the residence.
So how exactly can the average person diagnosed with SZ gain self-esteem and confidence and the courage to set goals and go after achieving them?
My own insight into this topic was gleaned over the weekend in July when I was sidelined by a sports injury. My approach might be considered radical yet here it is:
I had a run-in with a goblet squat at the gym and sprained a muscle. I was in tears one Friday morning because my right leg was in pain: it was on fire and I had to go to the ER to get it checked out.
A friend cheered me when he said: “Athletes get injuries.” On that weekend, I talked with another friend who validated this theory.
We created the philosophy of “credentialing” as peers with SZ. She told me: “If you are an active participant in a field, you can claim the title.”
She considers herself to be a cook and a pianist because she plays the piano and creates recipes. I claim stamps on my passport of life in the areas of cook and athlete. I’m an athlete because for two years I’ve done intense strength training routines at the gym three times a week.
We believe claiming a title boosts a person’s self-esteem and confidence.
It takes practice: I started out able to dead-lift only 65 lbs and now I can dead-lift 130 lbs.
Yet it’s not the result that matters: it’s the pursuit of the endeavor that is what counts in the end. You don’t have to be good at what you do, you just have to like doing it. With repetition will come mastery.
The playing field is truly level when you compete against yourself and no one else.
Claiming our right to be who we are and giving ourselves these credentials is the best way I know to counter the “schizophrenic” label with a title of pride.
How does this relate to negative symptoms? Or to self-stigma?
We get empowered in our recovery when we get credentialed.
What activities count as valid credentials?
One positive endeavor I can recommend for a person is cooking. Yes, cooking. You can take a weekly trip to the market and stock up if that is all you have the energy to do. Getting out of the house might be a problem yet cooking is a skill-building activity that can serve you well in your recovery.
Why? Cooking involves being creative, following directions, problem-solving and hopefully sharing a meal with others when you’re able.
Parents: ask your son or daughter to help you cook dinner if they live at home with you. I might scoff at my old days yet when I lived in the halfway house each resident was responsible for grocery shopping and cooking meals and housekeeping.
I also recommend journaling: to keep a dialogue with yourself, to get out of your head your thoughts and get on paper how you feel about what’s happening to you.
Other activities: listening to the music you love, and reading books if you’re able and doing art. It might not seem to others looking in from the outside that these activities are worthy contenders. Yet they are all skill-building activities. Being creative boosts dopamine and gives you a feel-good high.
I’ll end by suggesting it’s key to remember that a person in the throes of negative symptoms might also be in the woodshed at this point in his recovery.
This term is borrowed from the jazz world, where musicians circa the 1920s and 1930s went into the woodshed to practice their instruments in private before playing out in public.
UrbanDictionary.com defines woodshedding thus: "To lock oneself away with a musical instrument and practice, either a particular piece or in general, until the player has improved greatly or can perfectly play the piece he has been practicing."
Today there is no woodshed except the privacy of your home or a place in the community where you go to retreat from stress and practice coping techniques. The recovery process involves going off to practice these skills in the middle of an episode, after a hospital stay, or at other times of quiet self-reflection when you want to make changes.
So I urge family members to reconsider the perils of negative symptoms and put yourselves in your loved one’s shoes.
Of course it’s heartbreaking to see your son or daughter sit on the couch all day. In that case, I might try an anti-depressant to see if the person is actually depressed.
It’s sad to me that only work that directly contributes to the economic stream in society is deemed acceptable. Our personal growth and the strides we make in our recovery cannot be discounted.
So instead of identifying with our symptoms and labeling ourselves “schizophrenics” I suggest we claim a different title.
Does this sound radical after all? I’d love to hear your comments on this topic.
Mental Health Activist