Tag Archives: Advocate

We All Need Someone in Our Corner: Dealing With Doctors

14 Thursday Dec 2017

Posted by in caregivers, mental illness, relationships, schizophrenia, stigma, Uncategorized

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At several different times in my life, I have worked with the elderly. Twice I have worked in nursing homes and once I worked in a full-service retirement community (independent living, skilled living, and nursing home). One of the things I heard from staff in all of those places was the difference it made in care if family members visited and were involved. It seems that if the family is present in people’s lives while they are receiving care and treatment, then the care they receive will be more personal, more attentive and just overall better. It is hard to say, why exactly this scenario exists, but it does seem to exist.

I think the same is true for people with a severe mental illness both inside and outside of institutions. When I have spent time in a psych ward, I have always had family visit, and for the most part, I have been treated fairly well (I have a few disturbing stories, but not many). Outside of psych wards, though, I always bring my husband with me to various doctors appointments, and I think it makes a huge difference.

I went to the emergency room twice in 2017, and the doctors and nurses all knew I had schizophrenia. I always tell doctors (dentists, too) that I have schizophrenia when they are treating me. I tell them this because I am terrified of medical professionals and I want them to show me some level of patience and compassion. The stigma involved in a diagnosis of schizophrenia is real, though and many medical professionals have their own biases toward the illness.

One doctor in the E.R. asked me if I take my medications. “Religiously,” I answered. He said, “Good because most of the people I see with schizophrenia don’t.” I can’t blame the E.R. doctors in Southern California for being a little hesitant about people with a severe mental illness because they are on the front lines of medical care for the homeless (many of who are mentally ill and are without treatment).

I went to the cancer center yesterday to have my diagnostic mammogram (I won’t write the whole ordeal of this again, but I will say in the past year, I have had three mammograms, several ultrasounds, two biopsies, and an MRI). I had a fourteen-centimeter mass in my right breast. I am happy to report that the mass has completely disappeared from view on the mammogram and the last test I have to have (if I get the all clear) is an MRI in February. Anyway, the doctor who sees me at the cancer center came out and asked about my husband, and told me to tell him hello. She remembers that I always bring my husband to my appointments and the first time I saw her and told her I have schizophrenia, she allowed my husband in the room for all my tests.

The doctors at the cancer center and all of the doctors that I have to see are so kind and patient with me, and it makes a huge difference in how I respond and feel about medical treatment.

I wish everyone with a severe mental illness could have an advocate to go to the doctor with them. Not everyone can express how uncomfortable and frightening visiting doctors can be. Even drawing blood which is common for those of us on antipsychotics can be frightening to some people.  We all need someone on our side and on our team, and my experience tells me that having someone in our corner makes a huge difference in how we are treated and the type of care we receive.

New Post on Psych Central

23 Monday May 2016

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

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I have a new blog post up on Psych Central. It is about being an imperfect advocate. It mentions Bob Dylan, feminism, and stereotypes.

I hope you will pop over there and read it.

http://goo.gl/Ot4wtb

Events Where Our Numbers Are Few – Writing

06 Wednesday Apr 2016

Posted by in mental illness, schizophrenia, Uncategorized, writing

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I attended the Association of Writers and Writing Programs (AWP) conference last week.

What I found at the writer’s conference was that I was very much alone in my diagnosis. I didn’t meet another person with schizophrenia. It is possible that other people living with the illness were there, but not open about their diagnosis. It is possible I didn’t go to the right place at the right time.

I think even if there were other people there who have schizophrenia, it is fair to say; our numbers were very small. And that leads me to responsibility and privilege. There are millions of people living in the United States with schizophrenia, but the majority of them are either living in hiding (fear of losing their jobs or being discriminated against), or they are living on disability checks, in prison, or on the streets.

The reality for most people with schizophrenia is that a writing conference is cost prohibitive. A disability check would never cover the cost of hotels and food or the possible need for an airline ticket.

What does that mean to me, the fact that most people with schizophrenia are under-represented at writer’s conferences? It means that I have the responsibility to speak up about our lives, our illness, and our treatment. When a person meets me, it may be the first time they have ever knowingly met someone with schizophrenia.

I can talk about the issues that plague our community – lack of mental health (treatment), the high cost of medication, the high cost of care, incarceration, housing, stigma, discrimination, stereotypes.

In the mental health community, there are many people with schizophrenia who are writing. I read their articles and blog posts often. In the mainstream media, there seems to be only a handful of writers who live with schizophrenia (at least openly). I don’t know if it is because editors are not interested in the pieces of writing from the community of people who have schizophrenia, or if we are not submitting our articles to the places that are interested in our  stories.

What am I saying? If you have schizophrenia, and you show up some place and represent our community, it matters. It matters a lot. You may be representing hundreds if not thousands of people. You may be able to change a heart or a mind, and that changes a small world, and small worlds join the bigger world, and you begin to have an echo that goes out over the hills and valleys – an echo that can influence equality and justice, stigma, and stereotypes.

I was alone in a crowd, but I knew all of you were there with me. I’m with you, too. We need to be seen and heard. We need to join forces and show up. We can change those small worlds and create those echoes. We can do it for each other. If we carry each other’s burdens, we are never really alone.

(It was a good conference, and diversity issues seem to be a priority, but I wish our presence (those of us with schizophrenia) were better represented – in other words, I missed seeing you there).

 

Balance and Putting Things in Perspective

29 Tuesday Mar 2016

Posted by in bipolar, hope, mental illness, schizophrenia, stigma, Uncategorized, writing

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A few nights ago I had the worst night I have had in eight years. I took more medication to try and get relief from my symptoms, but the medication seemed to weigh my body down but not touch my mind. It was like I was a sloth physically and an extreme action movie mentally. I hated it. I finally managed to get to sleep and when I woke up in the morning things were better.

I think about having schizophrenia and trying to describe my experience by writing essays. Addressing and trying to eliminate stigma is important work. Making people aware of what living with schizophrenia is like is also important. Trying to bring awareness to the hardships of many people living with a mental illness is necessary. All of these things are significant, but the world is big and at times dangerous and at times cruel. It is also beautiful and almost magical at other times. There is so much more beyond schizophrenia or any mental illness.

I often read blogs where the writers are concerned only with their world, their symptoms, their illness, their medication, and how their day is going.

Last week there were terrorist attacks in many parts of the world. People died. No more kisses. No more writing letters. No more summer days to twirl ice cream on their tongue. No more flowers, hugs or photos. Dead. Gone.

Schizophrenia is difficult, but many things are difficult, and schizophrenia isn’t the end of my story like for those who died in Turkey, Belgium, Paris, Lebanon, or California.

My story goes on.

I needed to take a few days to process all that is happening in our world. I needed to look at my blog, at my writing, at my priorities and find some balance. A life can be big or small. I want my life to be bigger than an illness that I battle. I want to participate in the love, suffering, beauty, communities and natural environment that surround us. I want those things to be reflected in my writing.

This is a blog about surviving with schizophrenia, and the best thing I can do is show people that life doesn’t start and stop with mental illness. I don’t want to be on a bus that has a destination of schizophrenia, and that is the only tour I take. I want to take the tour of love, of happiness, of creativity, of sorrow, of family, of marriage, of travel, or community and natural beauty. There is so much to experience and to see before the end of my journey.

Schizophrenia takes a back seat while I find a balance between the personal and the universal.

It’s not all about me. It’s not all about you. It’s about us, all of us. I’m looking for common ground that has trails that all of us can walk together – not just the trail I walk, but one you can walk with me.

Mental illness means something is out of balance, and I’m going to try to restore that balance if only in my writing.

I Carry A First Aid Kit And So Do You

21 Monday Mar 2016

Posted by in hope, mental illness, relationships, schizophrenia, writing

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My husband and I walked into a big box store because we were looking for a replacement band for his watch. We found the area where they sell watches, but we didn’t see any bands. We walked to the electronics section where there were two women talking to each other behind the counter.

My husband approached the counter and although he was in full view of the clerk she continued her conversation with her colleague. She didn’t smile at my husband; she didn’t say, “I’ll be right with you.” She made no signs to show that he was a person who was in need of her attention.

After a minute, the woman looked at my husband and said, “Yes?”

He asked if they had any watchbands in the stores and she said, “I don’t think so.”

This incident isn’t the first time I have gone into a store, and someone acted as if I was invisible. Not recognizing or addressing someone existence is an aggressive way to deal with people. It is like saying, “I don’t see you. You don’t matter. You have no importance.”

My husband’s step mother is from France and thinks that America has the best customer service. I disagree. Too frequently, I am treated or my husband or someone else in the store, are treated as if they do not exist. I have seen it at major coffee shops (the baristas are too busy with their conversation to take the order of someone waiting in line). I have seen it in department stores, and I have seen it in restaurants.

And these people are being paid to provide people with service and make them feel like coming back to the store, restaurant, or coffee shop.

These scenarios are the closest thing I know of to how the homeless must feel every time someone walks by them and avoids their eyes. All the people who don’t want to know that someone is suffering in the street. Even if we don’t intend to give them money (I don’t always have a small bill and at times I carry no money at all) we can say hi to them. We can wish them a good day. We can say to them with a few words and a smile, “You are human. I see you. You matter.”

I know this must be asking too much of some people because even when they are trained and paid and on the clock they can’t manage to treat others with that much dignity and respect.

I wish all people would learn to treat each other with dignity, importance, and respect. But if people in the service industry can’t muster that kind of response and we experience it, let it be a reminder to us; there are people in our lives living in unimaginable conditions that we can make visible by eye contact, words, and smiles.

I have made it my new hobby that when I am treated badly to check my behavior and make sure I’m not spreading that aggression and disrespect.

All of us can be healers, even if we have wounds; especially if we have wounds. It is a wrapping of the band aids on injuries – we are all first aid kits.

My Role Model Has Schizophrenia

17 Thursday Mar 2016

Posted by in heroes, hope, mental illness, schizophrenia, stigma, Uncategorized, writing

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Recently I did an interview with a writer who was working on a piece about schizophrenia. The writer asked me, “Do you have any role models?”

I said, “Yes, I do. Elyn Saks is my role model.”

“Why is Elyn Saks your role model?” She asked.

“She has schizophrenia, but she is intelligent, successful, and living a fulfilling life. She isn’t amazing because she has schizophrenia she is amazing despite having schizophrenia.” I said.

Elyn Saks is successful by anyone’s standards. She has ties to two major universities (USC and UCSD) she is a lawyer and an accomplished writer. Anyone that looked at her resume would have to agree that she has impressive credentials. When comparing Elyn Saks with anyone in her field, she shines. These reasons and others are why she makes a remarkable role model for people with schizophrenia. We don’t lower the standards for her because she has schizophrenia – the standards are extremely high, and she meets and beats those standards.

She is a role model I can look up to, and admire. Her story is one of inspiration and hope. She also takes her treatment seriously which is essential for anyone to make it to my list of role models.

Today I read an article by a woman who markets herself as an advocate for people living with schizophrenia. Unfortunately, I think she could be a powerhouse in terms of advocacy, but she is too sarcastic (making stereotypical jokes about not killing people). She is also too harsh (always quick to swear). And the biggest problem is that she doesn’t take her treatment seriously (which in my opinion, disqualifies someone from being a true advocate).

I don’t want to be like the woman I just mentioned and miss the mark in terms of advocacy.  I would like to be a source of inspiration and hope like Elyn Saks. I want to be an advocate who is living successfully in every area of life including relationships and work. I want people to look at my life and feel like if I can do it, they can do it, too.

I hope in my lifetime to make an impact on stigma. I hope to make a difference for the people who will receive a diagnosis of schizophrenia in five years, ten years, and so on. I want the fear of being found out or discovered to end. I want the hostile work environments where jokes about mental illness are common to stop. I want all of us to be more educated, compassionate and have a better understanding of the reality of people with severe mental illnesses.

It is unlikely that I will ever accomplish as much as Elyn Saks, but I hold her out in front of me and keep walking toward her because some day the distance between us may seem more like meters instead of miles.

Out Of The Closet For A Year

16 Wednesday Mar 2016

Posted by in articles I wrote, mental illness, schizophrenia, Uncategorized, writing

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Yesterday marked my one year anniversary of coming out of the mental health closet. Many of my family and friends found out by reading a Facebook post that I have schizophrenia. You can find that post here. 

I started this blog about living with schizophrenia on March 19th, 2015. I have written hundreds of short essays and posted over 370 times.  I missed posting 25 days in the last year (that means I posted on over 300 days).

I have a blog on Psych Central that receives way more traffic than this blog. I have posted over 30 articles on that site. You can find that blog here. 

I have written 13 articles that are posted on The Mighty.You can find them all here.

On Christmas Eve 2015, I was featured on the People website. The article was shared over 2000 times.  You can read the article here.  

I had a short book of poetry and prose published. You can purchase it as Amazon (it is currently selling for a fraction of the publishing price – last time I checked you could buy it for $1.62). Pick one up here. 

I have been interviewed by several websites, magazines and had my book reviewed by Wordgathering. You can find that review here. 

I also took several creative writing classes.

I didn’t accomplish all that I wanted to, but I do hope that some people understand schizophrenia a little better and that in some way, I have made life easier for people with a severe mental illness.

Incredible ride. Incredible year.

 

 

A Gentle Reminder: I Have Schizophrenia, I Am Not A Schizophrenic

11 Friday Mar 2016

Posted by in mental illness, schizophrenia, stigma, Uncategorized, writing

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It is my pet peeve when someone calls themselves or someone else schizophrenic. I am a person with schizophrenia, not a schizophrenic.

There is a popular nonprofit that publishes personal stories from people who have schizophrenia and other disabilities. The writers of these personal essays frequently call themselves schizophrenic along with the VP of the organization. I feel, and of course, this is only my opinion, that the nonprofit that wants to raise awareness and reduce or eliminate stigma should, at least, be educating people about “people first” language.

I don’t have a right to insist that other people use “people first” language, but I do have a right to educate people that I find illness first language degrading and defining and way outdated.

Everything I write on my blog here and on Psych Central is to show that people with schizophrenia have endless labels or roles (lawyer, teacher, coach, student, brother, sister, wife, husband, mom, dad, etc.). Those labels are far more important than the fact that they have an illness called schizophrenia.

I have read several essays recently where the person who is writing the essay writes, “I am a schizophrenic.”

I don’t wear schizophrenia as a badge. I’m not proud of it (I’m not ashamed of it either) but you won’t find me parading that label around as if it is the only thing about me that is important.

It is the least interesting and important thing about me.

I’m sorry if you are tired of reading this same message over and over again. I feel like it is something I will write hundreds of times before I stop writing. In my time as an advocate, if I get that one message to stick with people, I will feel that I have done something extremely important.

Lovely, lovely, whole, beautiful people, please don’t limit you by defining yourself as an illness. The world is a marvelous, wondrous, and big place, you are a significant part of it, your illness is tiny, don’t let it overtake you.

In Defense of Caregivers

10 Thursday Mar 2016

Posted by in mental illness, schizophrenia, Uncategorized, writing

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When I was in school, I wrote an essay about a time when I was psychotic for six months. You can read the essay here.

When the teacher commented on the essay, she asked why my husband would allow my psychosis to go on for six months.

I found her line of questioning judgmental. Did she think that she would be able to make a better decision that would make the time that I was psychotic shorter? At the time, I told her that my husband and I had just moved to a new city and that he had just started a new job. She pushed her questions further and asked if I was alone all day and if my husband’s focus was on his new job.

I dropped out of the class shortly after that. I didn’t drop out because I felt the teacher was judging my husband’s response to my illness, but I have to admit I did find her critiques and input less valuable after those questions. Why did her questions bother me?

My husband has lived with my illness and me for eighteen years. No one on the planet deals with my illness as well as he does. No other person can talk me out of a paranoid episode (not always but sometimes). No one loves me more than he does. The very insinuation that my husband didn’t make the right choices for me or made me suffer much longer than necessary makes me angry.

If doctors don’t always know what to do with me, how is my husband supposed to know? If I had to put my care in the hands of anyone it would be my husband. Not only does he know me best, but he also wants the best for me.

I am sure that caregivers get second guessed by people all the time, and it is so unjust and unfair of people to think they would know a better course of action than the person closest to the person with the illness.

My husband feels guilty and blames himself for not doing more during those six months. I am sure all caregivers have experienced times of guilt or times when they blamed themselves for not responding this way or that way.

I’m asking everyone to think before you question a caregiver’s choice of action. You may think you would do something better or differently, but how do you know? How do you know what you would do if you lived for a day in our skin with all the same circumstances?

It doesn’t matter if my husband left me alone every day or if preoccupation existed over his new job. It isn’t his fault that I have schizophrenia, and that it is often difficult to treat. It wouldn’t matter if my husband went on a trip and left me to fend for myself – schizophrenia and its symptoms still aren’t his fault.

I’d like to tell that teacher that hinted that my husband should have done something differently that most people wouldn’t have stuck around as long as he has and retained his compassion, empathy and sense of humor. My husband is a rare person, and no one gets to doubt how he chooses to care for the person he loves the most – which I know is me.

Think Before You Cast That Vote

07 Monday Mar 2016

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

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I try to avoid talking about religion and politics on my blog because I don’t want to spark arguments, get people’s blood pressure up, or make this into a blog about issues. Normally, I write about mental health, relationships, and life in general.

I have to say something about this presidential election, though. And what I have to say has to do with all of you. Those of you living in the United States have a voice. You have a say in this election and for those of us with a mental illness, it is a critical time.

Think before you vote. That is all I am asking from anyone. Please think about what matters most to you before you cast a ballot in this election.

I will not keep it a secret from you that I am frightened by Donald Trump. He has called women names, he has threatened to put restrictions on Muslims, and he has threatened to deport millions of people. He has the support of people who are organizers and supporters of hate groups.

If none of what I have written so far bothers you, what do you think Donald Trump thinks about people who are mentally ill? I can tell you that he publicly made fun of a reporter with a disability. You can watch the video here. 

If Donald Trump has no empathy for people who suffer from a chronic illness, if he went so far as to imitate in a derogatory way someone with a disability what do you think he would say about someone with schizophrenia or bipolar disorder?

Many people are claiming that there are similarities between Donald Trump and Hitler. I don’t know if that is true, but I can tell you that the first people to die in Hitler’s Germany were the mentally ill and people with other disabilities. All the tests to “perfect” his killing machine were conducted on those with a disability.

I can also tell you that all the issues that impact people of color also impact the mentally ill – the majority of police killings involve a mentally ill person, people with a mental illness are being treated more often in prison than in hospitals, and there are stereotypes and stigma involved with being mentally ill. The list goes on.  It is in our best interest to care about the civil rights of all people because historically when other group’s civil rights are limited ours are limited as well.

I am frightened by the racism that the Trump campaign has brought out in this country. I am frightened for the people I love that are people of color. I am also frightened for all of us who suffer, and have been public about our mental illnesses.

I don’t know how a Trump presidency would turn out because I am not a psychic. I do know that if he believes the things he says that he lacks empathy for vast numbers of people. I will cast my vote for someone who wants to decriminalize mental illness, and get those who are suffering out of prisons and off of the streets.

I want to go forward with mental health treatment and the rights of those who are mentally ill. You can read all about our dark history. I want the lights to stay on and the sun to shine. Think about your vote. It matters. It not only matters to others, but it also matters to you, personally.

Let’s think about it.