Tag Archives: hospital

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.

Advocacy: The Time is Now

19 Wednesday Aug 2015

Posted by in mental illness

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I wrote a letter to my representative in Congress about the Helping Families in Mental Health Crisis Act. After I wrote to her, I read the bill in its entirety, and discovered it is a pretty good bill, but it has a couple of things that alarm me.

Changing the rules regarding HIPPA is a concern for me. I think allowing anyone access to another person’s medical information leaves too much room for abuse. In a previous post, I explained how my husband and I get around confidentiality in terms of my treatment by signing a waiver to allow my husband access to my medical information and the opinions of my doctors. We always arrange this as soon as we see a new doctor so that the doctor can keep the paperwork on file, in case anyone questions him/her about talking to my husband.

My other concern is a part of the bill that funds outpatient treatment. I’m not sure exactly how this would work but somehow “they” could force people to take their medications in order for the mentally ill person to live in the community.  It is called Assisted Outpatient Treatment or AOT. In theory I agree with this because I know that frequently if people would comply with their medications they would function at a higher level, and be able to keep their housing and possibly avoid a crisis. I said I was concerned about this but I am by no means completely opposed to it. I just worry about how this would actually work when transferred from paper to the real world.

I want to see more psychiatric beds available across the country and I pointed this out to my representative. There simply aren’t enough (not even close) beds for those that need this level of treatment.  I would like to see a big portion of the money go to inpatient treatment facilities.

I also wrote that it would be nice if mentally ill people were asked these questions and helped to draft these bills instead of always listening to families and advocates. I pointed out that many mentally ill people are capable of adding input and experiences about things that will ultimately impact their/our lives. I wrote this because I saw that the bill had the support of some advocacy groups that I find very offensive and questionable in terms of the rights of the mentally ill and in terms of how they present issues regarding the mentally ill. I can think of one advocacy group in particular that perpetuates the worst possible stigma surrounding severe mental illness almost daily in their social media.

I let my representative know that I am available to talk, e-mail, come to her office, etc. I have no idea if she would ever take me up on this, but it would be great if she did.

If you have a chance to read the bill, I encourage you to do so. You can find it online. If you love it, hate it, agree with parts of it, or disagree with the whole thing, I suggest you write your representative. Now is the time to be heard.  Even if you don’t agree with me, your voice is important. All of our voices are important.

This is one of those times when we can be heard about the mental health system in this country. It is time to stop complaining about the broken system and take action to fix it.  There is power in your words, experiences, and circumstances – use your power to make a difference.

Don’t Take Away our Hope with Your Words

18 Tuesday Aug 2015

Posted by in bipolar, hope, mental illness, schizophrenia

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Yesterday I read a guest blog post from a mother whose son has schizophrenia.

She wrote, “Every mothers’ worst nightmare is to have her child diagnosed with a mental illness, especially schizophrenia.”

Really? I would think the worst nightmare for a mother would be to have her child die. There is no hope with dead. Dead is dead. With depression (which is a mental illness) there is hope. With bipolar disorder, there is hope. Even with the “dreaded” (and I can’t tell you how tired I am of reading this stuff especially from people who call themselves advocates and are trying to create and change policies) schizophrenia there is hope.

I understand clearly that schizophrenia is different for everyone. I write that truth on a regular basis. I have a cousin in a state hospital and she is battling her illness in a terrible way. But there is still hope for her. No one has given up on her. No one has given up on the hope for improvement or change with a new medication, or a breakthrough in the mind. It happens.

I was actively psychotic for six months, and I had no idea I was psychotic until one day I had a little breakthrough of fear and reason. That breakthrough made me call my husband at work and ask to be taken to the hospital. At the hospital the doctor on call, said, “I don’t know you, but I am comfortable upping your medications a little.” He did that, and within two days, there was only a strange echo of the voices left – like a hollow whisper. Then they cleared up completely.

It can happen. I know for a fact it can happen, because it happened to me. Six months is a long time to be psychotic. My husband could have threw up his hands and said, “My wife is never coming back.” But he didn’t. He knew nothing about a possible breakthrough, or the hope of changing medications, yet somehow he still managed to have the hope that things would get better.

I’m not saying schizophrenia is easy on a parent. I am sure it is heartbreakingly hard, especially when you have the memories of what your child was like before the illness – usually, very intelligent, happy, successful, social, possibly athletic, or even an artist, etc.

I know schizophrenia can be devastating, but to continually tell those of us that have it that it is the “worst nightmare” the “most dreaded diagnosis” “the most severe of the mental illnesses” and the other ways that so many people put this, is so damaging to those of us who live with the illness and have easy access to those opinions (blogs, a writing conference, articles in the newspaper, articles in magazines both online and in print, and on television).

What do you think it is like to live with what you know people think of as “the worst nightmare?” It hurts your self-esteem, and it makes you want to stay in hiding. I was in hiding because of stuff like that for over twenty years. I finally came out, and there are days when I wish I could take all that I have written back, and hide my diagnosis. I’m not living with my spouse’s worst nightmare. You can read what he told me living with a wife with schizophrenia is like here.

There is hope. There is hope. There is hope. People try to take the possibility of hope away from those of us who are suffering by the choice of their words. I will give those words back constantly, because without hope there is no point in living, and then people end up dead. And that is where hope ends.

Hope. Hope. Hope. I have enough to go around, just ask me and I’ll send you some. Don’t be shy, my heart is full of it.

Suitcases from the Mentally Ill

08 Monday Jun 2015

Posted by in mental illness, schizophrenia

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A couple of years ago I was doing research on the history of the treatment of schizophrenia, and I ran across a book about suitcases that they found in an attic in a closed down psychiatric hospital. In the book, The Lives They Left Behind: Suitcases from a State Hospital Attic, the authors go through many of the suitcases (I think they found 400) and try to piece together the people’s lives who owned the suitcases. Many of the people’s lives that the authors were able to find information on entered the hospital and died there. Often times while I was reading the book I thought to myself, “This person doesn’t sound like someone who is mentally ill.”  The people who owned the suitcases had been admitted to the hospital sometime between 1910 and 1960, so you can imagine that what was considered “mental illness” changed a great deal in those fifty years.

I found the book to be interesting and sad. Interesting, because the people’s stories are often interesting, and sad because many of their lives seemed forgotten, and not wasted, because a life is never wasted, but interrupted in a way that their skills, talents, dreams could never be realized. Many of the people were buried on the hospital grounds.

Here is a link on Amazon to the book:

http://www.amazon.com/Lives-They-Left-Behind-Suitcases/dp/1934137146/ref=sr_1_1?ie=UTF8&qid=1433772879&sr=8-1&keywords=willard+suitcases

There is a photographer, Jon Crispin, who is photographing all of the suitcases. You can see pictures of his work, and some of the cases, here:

http://www.willardsuitcases.com