Tag Archives: progress

Progress, but Beware

07 Monday May 2018

Posted by in bipolar, caregivers, mental illness, schizophrenia, Uncategorized

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A digital pill, one that allows doctors or family members to monitor compliance with medications, was approved by the FDA. It is revolutionary. It sounds like the perfect solution for seniors who have complicated medication routines and need help remembering when to take this or that pill. The dark side of the discovery is that the potential for overreach and abuse is enormous.

The pill, equipped with a sensor, is activated when it hits stomach fluid and sends that data to a patch worn on the rib cage of the user. The information is then transmitted via smartphone to everyone “approved,” by the user.

That all sounds on the up and up and if my grandparents were still alive it would have made life so much easier for me because getting them to take their medications at the right time was an obstacle we never fully conquered. But this digital breakthrough wasn’t approved for pills for blood pressure or Alzheimer’s, or statins. It was approved for Abilify, an antipsychotic medication used mostly for people with schizophrenia, bipolar disorder and in some cases depression.

If that doesn’t sound alarming to you, maybe you don’t know the history of mentally ill people’s treatment in this country. A quick Google search will reveal that before the time of World War II many doctors believed in, and practiced, eugenics. Up until the 1970’s some states still had sterilization laws on the books. And of course, there were life-long stays in institutions. Few can claim ignorance about the lobotomy with the last “procedure” performed in 1967. And today, it is difficult to get treatment for a mental illness, and many people who suffer from one are on the streets or in prison.

With that being our history can you blame those of us with an illness like schizophrenia from being concerned? Will the pill be used to coerce parolees to take their medications? Will psychiatric facilities require the use of the digital pill before recommending release back into the community? Will Social Security require those on disability to report their medication compliance?

If schizophrenia weren’t the most demonized of the mental illnesses, I wouldn’t be as concerned. But the fact is every time there is a mass shooting in this country the media is quick to bring up the possibility of schizophrenia, and Hollywood doesn’t help that image at all as they never seem to tire of writing the creepy, lone killer as someone suffering from schizophrenia.

The reality is that mass shootings are more tied to a history of domestic violence than anything else and that people with schizophrenia are more likely to be the victims of crimes than the perpetrators of a crime. Also, they are more likely to hurt themselves than others.

It would be convenient for the public, lawmakers, and caregivers if everyone with a mental illness could be chemically restrained and there was a way to monitor and track that. I think everyone would sleep better at night, but it is a false sense of safety and a violation of rights.

I would like everyone who suffers from the same brain disease as I do to have as close as possible to a “normal” life, but that should remain their choice even if most people believe those who are ill are incapable of making that decision.

Hopefully, the people prescribing this new technology set limits on its use.

Self-Help, Progress, and Schizophrenia

06 Tuesday Mar 2018

Posted by in mental illness, schizophrenia, stigma, Uncategorized

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I bought two new journals. I have dozens of blank journals with monsters, flowers, and quotes on the covers, for me to fill the pages of, but these two new journals are not blank. One is, Start Where You Are: a Journal for Self-Exploration and the other is, 52 Lists for Happiness.

I don’t know why I am such a sucker for happiness related books, journals, exercises, etc. I don’t think I am unhappy. In fact, I feel happy most of the time. If there were something I would like to improve in my life, it is two symptoms of schizophrenia and the lower back pain I feel. The two symptoms of schizophrenia I would like to lessen are anxiety (because this impacts every area of life) and a lack of motivation. The lower back pain needs no further explanation.

There are all kinds of happiness books. Why is happiness such a big industry in the United States? Is it because most people are not happy? I think that happiness books are like coloring books or self-help books (of any variety). According to Quartz, Goodreads data suggests it is mostly women who read them. (In 2017 self-help was an eleven billion dollar industry.) Maybe we think there must be a way to be happier than we are. Is it the comparisons we make on our social media accounts? Sally and Jessica always seem so much happier than I feel, maybe there is a secret to it, so we consume yet another thing trying to make our way to an ever elusive place of happiness.

The fact that I buy these happiness (self-help) books proves that I am unremarkable. I am an average, college educated, middle-aged, married, middle income, woman, living in an urban environment, and I do average, middle-aged, married, middle income, college educated, urban dweller, woman like-things. The only thing that stands out about me is that I have schizophrenia (of course, this is overly simplistic, there are a million little things about me that make me unique). But the point is, all the stereotypes about schizophrenia don’t leave room, or space, for the truth about the people who live with it. And there are many truths.

Stereotypes are tricky because there is often a small bit of reality to them that make them stick. For instance, has any mass shooter ever had schizophrenia? Yes. Has anyone with schizophrenia ever worn a tin foil hat? Yes. Has a person with schizophrenia ever been violent? Yes. But, are we referring to the majority of people with schizophrenia? No. In fact, those stereotypes refer to a very small number of people with the disease/disorder. Saying these things are true of everyone with schizophrenia is the same as saying all people with schizophrenia are middle-aged women – obviously not even close to true.

There is so much to learn about marginalized people. I never tire of reading articles about people with disabilities, the nuances of racism, the language and struggles of the LGBTQ community and all the articles/work coming out about feminism. This is one of the most frightening (bigoted, misogynistic, homophobic, racist) times I can remember living in, but at the same time, there is so much progress by some groups to further our understanding, our acceptance, and the very civil rights of various groups. I hope that schizophrenia doesn’t get left in the dust. I hope that those of us with schizophrenia will keep in step with other marginalized groups and find our feet further along the path; the path that leads to better lives for all of us.  Somewhere in that statement, there is happiness.

 

Sites Like The Mighty Start The Conversation And That Alone Is Great

21 Monday Dec 2015

Posted by in articles I wrote, bipolar, caregivers, hope, mental illness, schizophrenia, stigma, Uncategorized, writing

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I went to bed last night and a controversy was just starting to brew on one of my favorite sites to write for, The Mighty. One of the articles I wrote for them was shared over 1,000 times on Facebook. The message of that article was about stereotyping people with schizophrenia, and it reached a very large audience. Bravo! Good for me, good for them, good for breaking myths, stereotypes and helping people understand that schizophrenia isn’t a one-size-fits-all disease.

When I woke up this morning the controversy raged on, and if fact, it had grown while I was sleeping. Now there is a petition against The Mighty asking them to apologize to the disabled community for the harm they do. (The post/article that started the controversy was about autism. A parent wrote an article and created the game BINGO with her/his child’s symptoms. Some Mighty readers were outraged by the article because they thought it made light of, or made fun of some of the hardest and most difficult aspects of autism).

Okay, then. I’m not going to disagree. Last week The Mighty posted a cartoon by a woman with schizophrenia that said she wanted to be called, “schizophrenic” and she said she had every right to request that. You can find the cartoon here. The editors at The Mighty contacted me before running the cartoon and asked me what I thought about it. I thought it was taking us back to the early days of my diagnosis (twenty years ago). I thought it was harmful. I thought it was against most of what I work toward (considering schizophrenia as an illness and not who or what I am). Okay, so I was able to say what I thought. Other people with schizophrenia thought the cartoon was funny and right on.

I think that young people today don’t know how difficult it was twenty or even ten years ago to talk about a mental illness (exactly what I said in my post yesterday), and it is sites like The Mighty that have made mental illness and other disabilities mainstream conversations. Do they always get it right? Not for me they don’t, and they never will for everyone, because they are telling the stories of individual people with disabilities and individual families caring for people with disabilities.

Talking about disabilities like talking about race, or gender, or LGBT issues will never be perfect for everyone, but there are people/agencies/organizations/media outlets that are very successful at getting the conversations going. Those conversations are critical to acceptance by the larger community, and they are critical for change.

Of course I am not going to agree with every single person who has schizophrenia, and I don’t even think that should be the goal. The goal should be to end stereotypes, discrimination and stigma, and having a massive platform like The Mighty to tell our personal stories helps to do just that.

I am standing behind the work of The Mighty. Nothing manmade is ever perfect, but it can be useful, empowering, beneficial, and life changing.  #IAMTHEMIGHTY #GOMIGHTYGO

Twenty Years With A Mental Illness: Have Things Changed?

20 Sunday Dec 2015

Posted by in hope, mental illness, schizophrenia, writing

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I was first diagnosed with a mental illness in the early 90’s. At first my diagnosis was depression, then bipolar disorder, and then schizoaffective disorder and eventually paranoid schizophrenia. I think my final diagnosis was given to me in 2006 or 2007. But I have been living with a mental illness for over 20 years.

I’m an old timer. I’m old school. I’ve seen a thing or two and I am happy to report progress. There are certain aspects of being mentally ill that I would give an A to right now, and others I would give an F.

I know I frequently write about discrimination, stigma, need for more treatment (especially accessible treatment), homelessness, and the mentally ill in prison. All of the things I just listed are real, and they are very pressing and important issues, and I would give most of these areas a D or F if I were grading them.

I said I would give an A to some progress we have made about mental illness though, and that A would go to awareness. We have come so far in mental health awareness over the past 20 years.

When I was first diagnosed, there were therapy and group therapy and there was the organization NAMI. Those were really my only choices beyond my medication for talking about and learning about my mental illness. Now there are more organizations providing education and trying to raise awareness than I can count. There are new organizations springing up all the time and many of these organizations are set up around telling people stories about the lives of those living with a mental illness.

There are also huge sites like Psych Central, Psychology Today, and others, devoted to getting information out there about all the different mental illnesses.

There are online support groups. There is online therapy. There are more celebrities than ever coming out with their stories of addiction, bipolar disorder, anxiety and depression (I still don’t see too much about schizophrenia) and there are more movies, books and television shows being created with characters who are struggling with one or more of these illnesses.  And now there are blogs – thousands of online journals where people can read what it is like to have a mental illness from people who are actually living with one.

When I was first diagnosed, friends of mine who were doctors, told me not to tell anyone about my diagnosis. They thought people would judge me, and reject me. I only came out publicly with my diagnosis 9 months ago – the young psychiatrist that encouraged me to come out must have known the world had changed while I was in hiding. Well, I flung open the curtains and showed the world what it is like to have paranoid schizophrenia, and I have to admit, the world for the most part has been kind, compassionate, and accepting. I give us an A for progress in that area and although that’s not everything, I think it is something we can all celebrate.