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Category Archives: schizophenia

Who has the Authority to Write About Mental Illness?

29 Monday Oct 2018

Posted by A Journey With You in bipolar, hope, mental illness, relationships, schizophenia, stigma, Uncategorized

≈ 3 Comments

Tags

bipolar, brain disease, mental health, mental illness, mentally ill, psychiatry, psychology, schizoaffective disorder, schizophrenia], Voice, writing

I came out publicly (including family and friends) with my diagnosis three or four years ago. Since that time, I have fought very hard to try and show people with schizophrenia living lives that are similar to those without the illness. I have fought to make people like me seen as friends, partners, sisters, brothers, daughter, sons, aunts, uncles, parents, etc. And I still think we need more people with schizophrenia writing these stories. The stories of a successful life despite a severe mental illness.

I had something happen to me the other day that broadened my view and made me feel guilty, sad, and like I wasn’t telling the whole story. I met a mother online whose son’s life is nothing like mine.  Many times I have written about the mentally ill who are homeless or in prison but rarely do I write about those with schizophrenia, or schizoaffective disorder who can’t live alone, who are medication resistant, or who never get to the point of managing their symptoms.

It isn’t that I was unaware of people who need more care like inpatient treatment or a group home. I am constantly aware of that because I have a cousin who currently requires that level of treatment. But I was fighting. Fighting for stories of success, fighting for stories of hope, and fighting for stories that I rarely heard, read, or saw in books, movies, or television.

There were many times when I was frustrated by parents and adult children for writing the stories about the illness and leaving those of us with the actual illness without a voice, or way of telling a different narrative. I realize now, that there is room, if we allow it, for all of the narratives about mental illness. There is room for us to talk and hear from those in prison, there is room for us to hear from those on the street, there is room for us to hear from the children of someone with a brain disease, and there is room for mothers, fathers, sisters, and brothers to tell their stories.

All of these stories matter and can help improve our understanding of schizophrenia, schizoaffective disorder, bipolar disorder and other illnesses that impact an individual and the ones who love them. I only hope that with so many people writing about the tragedy of mental illness that stories like mine and stories like other people I know won’t get lost, or not be as valuable (because they don’t fall into our comfort zone or understanding).

I hope along with the stories of sadness, pain, struggle, and grief that stories of hope and possibility continue to find space in popular culture. For years, the heartbreaking stories have captured our imaginations and driven the cultural response; I only hope that we continue to make room for the voices of those who have lived experience because like a kaleidoscope with one blacked out spot, the view is not complete, or as colorful, or as interesting without seeing the whole picture.

Forgetting Your Mental Health Might be the Best Thing for your Mental Health

03 Wednesday Oct 2018

Posted by A Journey With You in bipolar, caregivers, hope, mental illness, schizophenia, stigma, Uncategorized

≈ 4 Comments

Tags

advocacy, bipolar, brain disease, family members, help, hope, live life to the fullest, mental health, mental illness, mentally ill, schizophrenia], wellness

For the past few years, I have considered myself an advocate for the mentally ill. My advocacy corresponds with my coming out publically with my diagnosis after almost two decades of hiding it.

The problem with focusing on advocacy, writing dozens of articles, writing a blog, and doing many interviews about life with schizophrenia is that having a severe mental illness became my primary identity. Meaning, I focused a good deal of my time on having a brain disease.

I have written over and over again about how I am a wife, daughter, sister, friend, cousin, niece, aunt, writer, etc. and that I have many identities that have nothing to do with having schizophrenia. Although I wrote those words over and over again and said them in interviews just as many times, I wasn’t living that way. I was spending the majority of my time on things that were directly related to my illness.

I have seen many people (way too many to count) who receive a mental health diagnosis become advocates. It seems to be a way to try and make something positive out of something challenging, devastating, difficult, hard, and even at times, humiliating (because of stigma and stereotypes). I think advocacy is fantastic and I am glad that both family members and those with a brain disease are active in this work, but focusing on one aspect of your life especially one that can be as difficult as a severe mental illness is not good for mental health!

Doesn’t that last sentence sound ironic? Focusing too heavily on your mental health or diagnosis is not good for your health. For that reason, I am starting a blog (I’m keeping this one, too) that has nothing to do with the world of mental health (I hope to monetize that blog and make it a small business), and I am going to work part-time outside of the home in a job that is customer focused.

I don’t intend to give up my work as an advocate; I simply plan to start living a more full and varied life. At first I plan to work up to not thinking about schizophrenia for a few hours, and hopefully, after time, whole days will slip by where I don’t think about the world of psychiatry, mental health, stereotypes, stigma, or the world that consists under the branch of mental health.

Because let’s be real, what can be healthier than living such a great life that you forget you have a disease? Ignoring your mental health can be the best thing you do for your mental health. Riddle me this Batman.

A Difficult Day With My Constant Companion – Schizophrenia

20 Monday Nov 2017

Posted by A Journey With You in mental illness, relationships, schizophenia, Uncategorized

≈ 10 Comments

Tags

anxiety, daily activities, mental health, mental illness, mentally ill, panic attack, paranoia, schizophrenia], wellness

Besides being psychotic, one of the hardest parts of having schizophrenia for me is making plans to do something like go on a trip, go to brunch, attend a conference, start a job, or any other normal activity and then have those plans completely shattered by anxiety or paranoia.

I had a simple meeting with an advisor today, and ten minutes in, I walked out and left everyone sitting there. I couldn’t sit one more minute, my heart was racing, and I couldn’t sit still. I walked to our car; I tried to lay down and rest. I walked back to the office where my husband and two other people were talking, and I sat down for a few minutes, and then I excused myself. I walked to Starbucks, bought a banana, ate half of it, sat in one of the lobby chairs for a few minutes then joined the meeting again.

Seriously? I can’t hold it together long enough to have an hour-long meeting about a topic that directly impacts my life and well-being? If I weren’t so stressed out, I would cry. I ended up making it through the last fifteen minutes of the meeting, and I am home now where I had to take an extra dose of medication to settle down.

When I was younger, I had many more episodes of psychosis, and except those, I had a much easier time carrying on with the daily details of life. Now, I can have the best intentions, and I am unable to see through some of the simplest tasks.

It is so frustrating, humiliating, and discouraging to wake up, feel fine, and start going about the plans for the day then to feel overwhelmed by anxiety or paranoia (most often anxiety). A panic attack can strike anywhere at anytime no matter what your intentions are or how important what you are doing is.

I know that I am lucky that I can sort out my thoughts enough to write articles and essays, but that is only a small part of being a functioning adult – there is so much that needs to happen on a regular basis, and so often I am incapable of making that happen.

My husband has endless patience with me, but I do not have the same patience with myself.

Today, was rotten, and I am feeling a little sorry for myself for having to live with the symptoms of schizophrenia. I’ll get over it, but I need this minute – can everyone just give me this minute, please?

 

Going for Gold – A Positive Attitude

28 Thursday Sep 2017

Posted by A Journey With You in hope, mental illness, schizophenia, Uncategorized

≈ 2 Comments

Tags

breast cancer, cancer, death, gold, health, illness, inspiration, life, medical, mental health, positive attitude, rich, schizophrenia], wellness

For those of you who are friends with me on Facebook, you can just skip over this post because you probably have read most of it before.

This year, I had, well I guess realistically I am still in the midst of, a breast cancer scare. For four and a half months, I went through mammograms, ultrasounds, an MRI and two biopsies (the doctors are going to begin testing again in six months because they couldn’t completely rule out cancer). I think for most people this would be challenging, but for someone like me, who is overly anxious every time there is the involvement of a doctor, it can be more than tough. I get so anxious around doctor’s that the last time I was in the emergency room, they were not going to let me go home because they couldn’t get my pulse below one hundred. My pulse always runs high, but it can go as high as 150 at the doctor’s office.

Anyway, it has been a stressful year. During the stress of appointments, the possibility of cancer and all the treatments that would require, my husband had one health issue after another. He has an autoimmune disease, so his immune system is weaker than most of us. This year he had mono, two bouts of tonsillitis, a sinus infection and a virus that itched like wild and covered his whole body with circular sores except for his face, hands, and feet. (He just started breaking out with it again).

Well, during all of this I had to find a way to deal with the possibility that I might have cancer. I thought about chemo, radiation, surgery, etc. I also thought about dying. Eventually, at least on most days, I was able to get my thoughts to focus on the fact that I am almost 52 years old. That is not young. I am not ancient, but I have lived a pretty full and in some ways fantastic life. I have traveled to Egypt, Isreal, Cyprus, many countries in Europe and South America. I have a college degree and still take classes to further my education on a regular basis. And most importantly, I married the love of my life and had almost twenty years with him – twenty years spent with the person you love most on the planet. I realized that I couldn’t complain about the life I have lived even if it involves breast cancer.

My health up to this point has been relatively good. I have had many opportunities. I have never been hungry. I have never had to live without shelter. I have never lost anyone I love to violence or war. Compare this to the stories around the country and especially around the world, and you can easily see what I mean. Also, if I do have cancer, I have health care and a team of doctors that are perfectly capable of providing me with excellent care and treatment.

I can’t say that I am always this positive. I have my days, and to be honest, I have only reached this level of acceptance and gratitude around my health. The next thing I have to tackle is how I feel about my husband’s health because even if he cuts his finger, I have a near breakdown. I worry endlessly about him, his happiness, his health, his whole life.

So, don’t think I have this positive attitude thing covered. In some ways I do, and in other ways, I have a long way to go, but every negative thought conquered is a battle I have won, and I’ll take all my wins and collect them like pieces of gold.

For those of us with a mental illness, we need a treasure chest full of that kind of gold to keep us going. I have a few more pieces now, and that is something that makes me richer – no one can complain about that!

My Latest Essay on Drunken Boat

24 Wednesday Aug 2016

Posted by A Journey With You in articles I wrote, mental illness, schizophenia, Uncategorized

≈ 4 Comments

Tags

Art, artist, essay, history, insider art, mental illness, outside art, paintings, psychiatry, psychotic, writing

I hope you will read my latest essay on Drunken Boat. It is about “Outsider Art.”  I think those of you who have any connection to mental illness will find the essay interesting. If you do read it, please let me know what you think of my opinion of “Outsider Art.”

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