When You Have to Rebuild the Life Mental Illness Took Away From You

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During the most difficult months of my recovery from schizophrenia, a friend from my childhood married. Although we had been close as children, I had not seen her for years, and was not present at her wedding. But I saw pictures of my friend in her white satin gown, dancing. She appeared joyful and excited as she and her handsome new husband invited the attendees to join them on the dance floor and celebrate. I was happy for her.

When I was a girl, I used to dream about my own wedding – the dress, the celebration and the feelings I would someday experience. Now, here I was, finally at the stage of life where I could fall in love and marry, but schizophrenia and the side effects of my medication left me disabled. One evening, I spent hours lying in bed thinking about weddings and how wonderful life could be for others while, for me, it was a struggle just to make it through each day. Years later, I would return to college and begin dating again — but back then, getting married seemed about as likely as traveling to the moon.

During the four years when I was suffering from untreated schizophrenia, and homeless, many of my friends started careers, married, bought houses and had children. While I was ill, I never considered the lives my former friends were living, or what I was missing. But when antipsychotic medication finally cleared my mind, it was devastating to think about the empty years that had passed.

Initially, when I began treatment, my family and doctors emphasized the importance of rebuilding a social life. Among other things, I was invited and encouraged by a woman in her 80s to volunteer at a nursing home. She drove me to the facility every Tuesday, where I helped organize a church service for the residents. There were six women volunteers, all in their 50s or older, and me.

I began to enjoy volunteering with the friendly women and the residents. Every week, before the service, the other volunteers and I would have salad and pizza together at a local restaurant. I valued this opportunity at a time when I was disabled.

Volunteering at the nursing home caused me to reflect on my own life, especially how much I had lost. I saw people severely disconnected from who they used to be. This reminded me of the person I used to be before I became ill. I was volunteering at the nursing home because I was too fatigued and disabled to work a regular job. To this day, every time I drive by the nursing home, I feel a sense of grief – both for the residents who live there, and for the years I lost to untreated schizophrenia. We had a shared disconnect with the world.

During this period when my recovery seemed impossible, I also had the opportunity to volunteer for a program that served international students, through a local university. This was my favorite activity at that time as I felt a sense of community and connection with the students. I would fight the lethargy, polish my nails and dress in my best clothes to meet college students from India, China, Africa and other parts of the world. I greeted young people from China using Chinese phrases I learned years before, and I began to feel like myself again. But even at these events, I felt a sense of grief. I was not well enough to study in college along with my new international friends.

During that year, I contacted a local university professor who was doing research in molecular biology. I had thrived in the lab years before and loved the work. But when I met the biology professor, I was exhausted, distracted and unable to focus on our conversation. Because of my disability, I was not able to participate in the local scientific community.

Today, thanks to effective medication, I have made a complete recovery from schizophrenia and am a college graduate. I have done research again at the university. I have many friends my age who share similar goals and interests. Also, I have casually dated a few young men.

Looking back to the time when I was very ill, and not myself, I did not enjoy all of the social events I attended. But being with different types of people was a necessary and important stepping stone that greatly contributed toward my full recovery. It helped me move towards a time in life when I would have close friends again with whom I could share my heart, my hopes, and dreams.

People who struggle with mental illness must not lose sight of the life they lived before the onset of illness. They need to remember who they once were, and dreams they once held dear. For me, I badly wanted to become the same vivacious, happy and busy person I was years back. Today, I am.

As I rebuilt my life, it was important for me to not lower my expectations, and to never give up on myself. Once again, I have many dreams for the future. Among other things, I still hope to someday wear a white gown and dance.

Follow this journey on Bethany Yeiser.

 

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A Response to Charrisse Jackson-Jordan's Schizophrenia Joke

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I am a wife, a mother, a former teacher, a writer and, like a lot of people on this planet, I occasionally watch reality television shows. I’ve cut back in the past year on all of the “Real Housewives” shows because I’ve realized they disgust me.

We’re putting narcissistic, self-centered bullies on our television sets for all the world to see. These are women our teenage daughters may be looking up to as
role models, and they rarely set good examples.

I was flipping through channels the other night and saw the re-run of “The Real Housewives of Potomac” reunion, so I stopped and watched for about 10 minutes. When the women were questioning Charrisse Jackson-Jordan about her life and what was going on with her husband she became uncomfortable and stumbled over her words, jumping from one thought to another. She suddenly said, “I am schizophrenic,” and everyone laughed.

Everyone laughed because she said “I am schizophrenic.”

Why is schizophrenia funny?

Why use the word “schizophrenic” as an adjective to describe your muddled thinking?

Schizophrenia is an illness people live with, but it does not define who they are.

Approximately 1 in 5 adults in the U.S. — 43.8 million, or 18.5 percent—experiences mental illness in a given year.

One in five. How many women are on “The Real Housewives of Potomac”?

Andy Cohen, as the moderator or mediator or just the presenter of this show, I believe it is your duty to speak up when an ignorant woman says something offensive. You should be setting an example for the vast amount of
people who watch your show.

Stigma is one of the main reasons people with a mental illness do not get the help they need.

What is stigma? Stereotyping, labels, bullying, discrimination.

What happens when people with a mental illness don’t get medical
treatment?

  • Mood disorders, including major depression, dysthymic disorder and bipolar disorder, are the third most common cause of hospitalization in the
    U.S. for both youth and adults aged 18–44.
  • Adults in the U.S. living with serious mental illness die on average 25 years earlier than others, largely due to treatable medical conditions.
  • Suicide is the 10th leading cause of death in the U.S., the third leading cause of death for people aged 10–24 and the second leading cause of death for
    people aged 15–24.
  • More than 90 percent of children who die by suicide have a mental
    health condition.

Mental health conditions are often treatable medical conditions. When people don’t get the medical attention they need, they suffer, their families suffer and the trickle-down effect of this suffering can reach into communities.

How do we eliminate stigma? We stand up and speak out for those who can’t. We are strong and take action to reduce stigma.

According to the National Alliance on Mental Illness we should:

  • Talk about mental health with friends and family
  • Share linksto resources on social media
  • Not bully, stereotype or label others
  • Call people out if they use stigmatizing language

If we stop discriminating against those who live with a mental health condition, those who need medical attention may ask for it.

If we stop bullying those who live with a mental health condition, they can feel safe and want to seek help.

If we stop stereotyping those who live with a mental health condition, maybe they won’t feel alone and ashamed.

A mental health condition is an illness. It is time to start treating it like any other illness.

According to Dr. Martin Luther King, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”

Now is the time of challenge and controversy. Now is the time to stand up and speak out. Only when we speak openly and honestly about mental illness will those in need receive the hope, help, and medical care they deserve.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

The Mighty is asking the following: Describe a scene or line from a movie that’s stuck with you through your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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6 Myths About Schizophrenia I Want to See Busted

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I have undifferentiated schizophrenia, a mixed bag of symptoms and emotional distress. I’ve been “sick” as long as I can remember. My first memory is of a hallucination. Incidentally, it was the only one of my visual hallucinations I have ever spoken out loud to, that I’m aware of. That’s something I want to talk about, the misconceptions of schizophrenia, and maybe a little bit about how it frustrates the goobers out of me that we are portrayed as Scary Monsters and Super Freaks in the media. Even my favorite TV show used the phrase “cuckoo for cocoa puffs” to describe a suspect with schizophrenia two weeks ago. That really disappointed me.

 And I’m a bit of a hypocrite on this, as I call myself “crazy” quite often, and actually prefer my friends say that in public instead of “schizophrenic.” But there’s a reason for that.

With all of the mental health awareness and empathy and activism and visibility; with all of the commercials for mental health medications and the popularity of therapy and self-awareness, no one seems to get, or to want to get, schizophrenia.

For examples, I’ll give you some stereotypes I, not just as a person with mental illness, but specifically a person with schizophrenia, wish I could just wipe from the collective memories of the human race.

1. Everyone with schizophrenia is a “religious freak” plagued by demons.

I do not have a “special relationship” with any God or devil. In fact, I don’t believe in a God or devil, though I do believe in heaven for animals. I don’t think my illness has anything to do with my spiritual maturation over time.

2. You can always tell someone has schizophrenia because they talk to themselves.

I do not jabber at my hallucinations. Addendum: as far as I know. I will sometimes blurt out at a persistent audio hallucination, but I do not converse audibly with my visual hallucinations. It’s enough that they are there. I treat them like errant ghosts and ignore them. 

3. All people with schizophrenia are dangerous or violent.

I do not have abnormal or unusually violent fantasies. Everyone has a little bit of darkness in them, mine isn’t any darker than most. I’m always more a harm to myself than others when in psychotic states. In fact, when people with schizophrenia are violent, its usually because they have a history of other disorders, like addiction

4. People with schizophrenia have no idea anything is wrong with them.

Although it’s true that 50 percent of people with live with schizophrenia also experience a lack of awareness of their condition, or anosognosia, that doesn’t apply to everyone. I know I’m sick.

5. When we’re testy it means we didn’t take our meds. 

Medication doesn’t solve all problems and psychiatric medication doesn’t work like aspirin. I do take my medication seriously. I have worked diligently with my doctors over the years to get the most out of my medications with the least amount of side effects. I’ve gained weight on medication, I’ve been a zombie on medication, I have been worse on medication. Yes, I took my meds today. And even if I hadn’t, it wouldn’t make a difference to the temper tantrum I’m having now. Sometimes people get frustrated, that’s all. 

6. People with schizophrenia must be sheltered from reality.

It’s OK for me to feel. I do not have to be shielded from the ugly and nasty and sad in life. Sure, I avoid the shelter animal commercials when I can because they make me sad, but that is mostly because I don’t want to be sad while I’m watching the morning news. It’s all right if I get angry, or happy, or a little bit hyper or a little depressed. Emotions are a natural part of life.

These things are not just true for me, they are true, to some extent, for a whole lot of people with schizophrenia. We are not all sitting in dark rooms listening to death metal while sharpening knives and making eyeless collages of people from high school. A lot of us are out in the world, going to our doctor appointments, taking our meds, trying to live a quality life. I can’t help but think that if more people could put a funny face on schizophrenia (see photo below), a lot of the above stereotypes would fade from view.

Cydniey Buffers makes a funny face.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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11 Things People With Schizophrenia Wish Others Understood

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Many people with who live with mental illness face stigma at some point. But a study by Indiana University found that this stigma was particularly strong toward people with schizophrenia.

It doesn’t stop there: Only around 15 percent of people with schizophrenia in the United States are employed. Approximately 70 percent of people with schizophrenia have experienced some form of discrimination. Only 46 percent of people say they would tell a friend if they were diagnosed with schizophrenia. And out of those people who have schizophrenia, about 50 percent experience a lack of awareness called “anosognosia,” meaning they aren’t aware they have the illness at all.

Perhaps the most important stat: While only 1 percent of the world’s population has schizophrenia, 100 percent of those people deserve respect.

We asked people in our community who live with schizophrenia and related illnesses to tell us one thing they wish others understood.

Here’s what they want you to know: 

1. “My mind can be louder than anything else around me.” — Misty McPhetridge

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2. “It’s not always easy to live with. I have all my life. You don’t trust people, and you are always afraid. People don’t understand. You need your space sometimes.” — Brenda Melville

3. “I am a person who has a chronic disease and that disease happens to be schizoaffective disorder. That’s all there is to it. Ask me how I am doing, if I’ve been taking care of myself, if I’m feeling OK, if I need someone to talk to. Treat me like person because that’s what I am. I am not a stereotype.” — Syrena Clark

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4. “I’m on the recovery path; that means I’ll do everything in my power to overcome the obstacles I might face. It only makes me stronger.” — Matilde Magro

5. “Hard to name just one… Definitely would like people to realize just because I have schizophrenia doesn’t mean I’m not human. Words hurt. That joke about someone hallucinating or being delusional is not acceptable. Your joke = my reality.” — Bailey Focken

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6. “There is so much stigma about schizophrenia that many of us do not tell people in our life — friends, colleagues, even partners and family. Many of us rightfully fear discrimination. We have to go through life with a secret, which means nobody knows what we’re going through and can’t help or support us when we need it. This means people with schizophrenia are pretty much invisible in positive roles in society. I wish people understood more about schizophrenia and were welcoming of us so we didn’t have to hide it and feel scared of people’s reactions.” — Jeanette Purkis

7. “Mental illness is not a deficit of character; it enhances it. Sure, it takes lots of personal commitment and support, but for those who are able to support loved ones — you have changed a life. I am a person who receives and provides services; it’s called lived experience, and my best feature is that I did not get bitter. I could not have done it without the support of my sister.” — Christine Wabals

8. “I can be a good employee, wife and mother with this diagnosis.” — Lori Allen Bernstein”

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9. “I’m not a danger to anyone but myself occasionally. I’m lonely. I’m hurting. Scared, but not dangerous.” — Mary Mahorney

10. “It’s not an excuse. The diagnosis is real. I fight every second of the day to keep my grasp on reality. I would change it if I could; I don’t want to feel this way, but it’s not my choice.” — Mary Mahorney

11. “We have more similarities than differences.” — Rebecca Chamaa

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*Answers have been edited and shortened for brevity.

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When You Can’t Get Help for a Loved One With a Serious Mental Illness

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Have you noticed when an elderly grandparent develops Alzheimer’s, it’s usually expected for family members to take care of their affairs, help with appointments and communicate with medical staff?

Because Alzheimer’s impacts brain function, right?

Then why doesn’t our system see the parallels between this and severe mental illnesses?

In all of these cases, brain function is impaired. We wouldn’t ask an Alzheimer’s patient to call doctors, remember their appointments, fill out paperwork for Social Security, pay their bills, raise children without help and magically remember to take all their medications, would we?

Then why in the world does our legal system expect this of patients with severe mental illness?

When well-meaning politicians didn’t want to force treatment and prevent the unnecessary institutionalization of patients, long-term mental health hospitals were closed and new policies were made. But these policies created giant loop-holesSeverely mentally ill patients were shut out of treatment, left to the streets and prisons. Now, approximately 200,000 individuals with untreated mental illness are homeless, constituting for one-third of the estimated total homeless population. Recent studies suggest that at least 16 percent of inmates in jails and prisons have a serious mental illness.

And the laws we’ve created to protect patients privacy — passed through the Health Insurance Portability and Accountability Act (HIPAA) — further solidified patient rights by insisting that patients 18 and older must give signed consent for any medical information to be shared with another. This shut the door to all family support and communication with doctors.

We know that mental illness is a broad category that includes depression, anxiety, bipolar disorder, schizophrenia and other needs.

But what might be less well known is that out of those who have have schizophrenia, 50 percent have anosognosia, which means they have a lack of insight into their illness. 40 percent of patients with bipolar share this same lack of insight. Without the awareness that they are sick, this large group of patients will not seek treatment.

I believe telling ourselves we are being noble by allowing these patients to come to terms with their illness in their own time and giving them the right to be sick, is just plain ridiculous.

Tell that to my 9-year-old niece who lost her mom to a sea of paranoia at age 6 because assisted treatment wasn’t an option.

My baby sister, Julia, was 23 when she had her first episode. When she began to spiral out of control, she lost her job, health benefits, disappeared into her thoughts and because she didn’t seek treatment, she lost her 6-year-old daughter. Life became solely focused on her illness. Our only options were:

1. Calling the police

2. Calling Child Protective Services.

3. Calling her doctors to share how she was, knowing they couldn’t respond with more than, “I’ve received your message.”

These were pathetic options that revealed a reactive system and barred Julia from a preventative one.

Julia couldn’t think clearly enough to advocate for herself. She told me that “sharks speak Vietnamese” and began to speak in their language. Voices and paranoia swarmed her senses and reality was out of her grasp. Without this sense of reality, she couldn’t access necessary treatment nor did she see the need for it.

HIPAA laws prevented her family from helping her access treatment through communication with her doctors.  

As a result, the people who loved her most were not able to help her grasp reality once again. She didn’t have the capacity make her own appointments or sign a release of information for communication with doctors in this state.

Her doctors were locked out of being able to assist her.

The only way they could admit her was with her consent or if she proved a “harm to self or others,” meaning once she became violent they could help her.

Isn’t it too late by then?

If mental health reform had passed prior to when Julia became sick, her story could have been different in these ways…

1. Her family could have spoken freely with her doctors about her needs.

2. Her doctors could have followed alternative legal steps to provide assisted treatment knowing that anosognosia was present and prevented her from accessing care.

3. With HIPAA reform and Assisted Outpatient Treatment laws in place, perhaps she would have been able to gain stability before she lost her job, lost custody of her daughter and spent years spiraling in a fearful sea of paranoia.

Culture can change through intentionality.

Relentless voices are the way to end the silence.

Relentless voices will help us create a better system.

Relentless voices will save lives.

This issue impacts every culture, every socioeconomic status, and every city.

The time for mental health reform is now. Passing mental health reform will remove the loop-holes and provide hope for my baby sister and many more like her.

Learn more about the movement to reform mental health.

Will you voice your support?

Follow this journey on Teach it Mama.

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5 Ways Having Schizophrenia Has Made Me a Better Person

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Don’t get me wrong — I wish there was a cure for schizophrenia so people could say goodbye to this often debilitating and life-threatening illness. I try hard not to romanticize mental illness in any way, but I also want people to know the consequences of having a severe mental illness have not been all negative.

Here are five ways that living with schizophrenia has made me a better person:

1. Having schizophrenia increased my compassion and empathy.

I care about everyone who suffers from schizophrenia, not just me. I think about the homeless and the people in prison, and the people who are medication-resistant. I think of all those people who may have it worse than me, and I try to advocate for them. I write about their struggles and try to get others to pay attention. I frequently write to my representative in Congress. I not only care about people with schizophrenia, I care about all people who have, or have had to suffer. I know what it’s like to suffer and can sympathize with people who have lived through trauma or are dealing with a chronic or mental illness.

2. I don’t take anything for granted.

Two strangers rescued me from two suicide attempts. My illness nearly killed me. I feel lucky to be alive. Knowing that I came so close to losing my life gives me a different perspective on almost everything that happens to me. I feel like every day is a gift that I almost didn’t get to experience. This knowledge makes being grateful and thankful almost second nature.

3. I work hard at relationships.

I know there are times when dealing with my illness is difficult for the people who are closest to me. When I’m stable, I make every effort to be there (in any way possible) for the people who have supported me, because I know their care has contributed to my treatment. I actively appreciate friends and family.

4. I am stronger.

Life has its ups and downs, disappointments and tragedies for those of us who have schizophrenia and those of us who don’t. Dealing with a severe mental illness has made me better at dealing with the tough stuff that comes up in life.

5. I am full of hope.

I have spent up to six months in an active state of psychosis. My prognosis was bleak. I recovered from that long-lasting episode and went on to start a new career, make friends and enjoy life again. When the unlikely happens to you, you tend to believe that it can happen to anyone.

I would be the first to get in line if there was a way to cure schizophrenia, but since that day hasn’t come yet, right now you’ll find me looking for something worth keeping in a pile of mud. And there is something worth keeping — it’s me and all the ways I’ve grown from having to live with a severe mental illness. It has knocked me out and knocked me down, but I keep getting up better than the last time. Schizophrenia is not going to win. I’ve got some awesome tools and can put up a good fight.

All rights reserved. A version of this article originally appeared on PsychCentral.com as “5 Ways Schizophrenia Made Me a Better Person.” Reprinted here with permission.

If you or someone you know needs help, see our suicide prevention resources.

If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

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