I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.
I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.
I’ve spent much more time out in public lately, and I have noticed that I enjoy talking to strangers. I usually start up conversations with servers in restaurants, and with cashiers in coffee shops and grocery stores. I frequently say something self-deprecating or humorous in another way, to start up a little back and forth.
Yesterday, my husband and I went to four museums by our house, and we talked to people viewing art, people working the doors, and as usual, I complimented a few women on their outfits as we passed them walking through the park.
Years ago, I noticed that my dad would talk to everyone he encountered and I found it annoying. Now, I’m just like him. I like talking to people. I especially like it when we share a laugh, a few smiles, or impart some information to each other like a favorite place to shop for sales, etc.
These interactions with people are like little fuel charges in my day. They don’t take energy; they give energy. Unlike how I feel about most social media. So many of the writers I am friends frequently encourage me (and others) to find “your community” “seek out your community” “rely on your community” “build your community,” but the writing communities and communities for women are less than supportive.
Some of the women writing communities I belong to have a call out culture of shame and humiliation if someone makes a mistake regarding a social justice issue. I don’t know how all of us are supposed to learn the ever-changing language, norms, preferences, etc. of different groups if we don’t learn it from somewhere and that learning can mean making mistakes.
It has to be okay to make mistakes without calling the person’s intelligence, character, intentions, etc. into question. I don’t know everything about the LGBTQA community or racism, and I am willing to bet that the people who try to make others look bad so they can look virtuous and knowledgeable and “above it all” don’t know everything about the mental health community. For instance, I bet they don’t know what those of us with a mental illness find offensive, degrading, stigmatizing, etc. Yet, I don’t try to shame people who make mistakes.
Other communities of women are supportive of you only if you have social capital. In other words, if you are a well-known writer, you will get hundreds, possibly thousands, of likes on anything you post, no matter how mundane. But if you are not well known, or don’t have contacts, or something that others feel they want to be a part of you might get one like or two likes and those come mostly from people who know you in real life.
So these communities that we are often told to seek out, join in, get support from are often not welcoming or supportive at all. I have found the same to be true of the mental health community. You would think that I would be a natural fit in the communities based on mental health. I write about severe mental illness; I have lived experience, I put myself and my story out there as an activist.
In the mental health communities, I find that the same hierarchies exist regarding social capital. I also find that in many of the communities, it seems like it is just people looking for attention. They don’t want to start real conversations or help each other to move up, move beyond, challenge, live better, etc. Frequently it is about someone posting a picture (I see this at least twice a day) with the caption, “Everyone says, I am ugly, do you think I am ugly?” Of course, it will be a photo of a young woman in her early twenties that is attractive. I can’t say that no one has ever called these young people ugly, but I can say that this happens so frequently it just looks like a way to get attention and hear people say positive things. Which, I have to admit is sad and possibly does belong in a mental health group. I don’t know.
But for whatever reason, this “find your community” mantra that so many people suggest, espouse, and recommend to others trying to find support, friendship, camaraderie, etc. doesn’t often work, and people are frequently left feeling more socially isolated and alone than they did before. I know I do. I belong to a dozen groups online and don’t feel real support from any of them.
I do, however, feel real happiness from interacting with people in real life. Of course, I love having lunch with friends; I think I am going to love my new part-time job (working with the public) and I like talking to strangers even if I only encounter them for a few short minutes.
If your social media life leaves you feeling hollow, lost, lonely and isolated, know that you are not alone. I feel that way almost every day when I try to reach out. It doesn’t surprise me that anxiety disorders have skyrocketed in this country. When you judge your writing, your creativity, your problems or whatever you post by the number of likes you receive (support you receive) or when people try to shame you for not knowing the latest changes in the world of social justice, you can end up feeling depressed and isolated, misunderstood or not seen or heard.
If that happens to you, try going to the grocery store and ask the cashier what the best kind of ice cream is. They may not know, but they may give you a recommendation that makes binge-watching old episodes of Golden Girls or MASH a Saturday night celebration. In any case, you will have started a conversation and those small conversations, the little ones throughout the day can revive you, lift you, carry you through the downfalls of what people thought would connect the world and open us up to each other in life-changing ways. The experiment of social media has failed to bring us together, people are more lonely and isolated and divided than ever. I’m relying more heavily on the old-fashioned version of social media – talking, and I’ve already discovered two new kinds of ice cream, and that is just the beginning of the benefits.
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.
I don’t know ninety percent of my friends on social media in real life. I can tell you that I have watched some of their children grow from birth to toddler. I have seen them adopt puppies and cats, and I have frequently read about the loss of a loved one. I don’t know most of the people on my “friend’s list,” but I would recognize them at a writer’s conference (which frequently happens) or in a workshop.
All that is to say, I read what people are posting, and I have been for years, and the level of comfort that most people toss out about anxiety and depression is amazing. It seems like the majority of people I connect with on social media have a diagnosed anxiety disorder or depressive disorder, or they have diagnosed themselves.
In the circles I am a part of it is perfectly natural and well accepted to discuss social anxiety and panic attacks, it is a little less prevalent to discuss depression, but I still see a post about it almost every day. The way people toss out these two disorders has always left me wondering if people are “claiming” them or if they are taking medication for them? If everyone who is posting about social anxiety and panic attacks or depression is being treated for those disorders then the statistics on mental illness are far from accurate – it is a crisis.
I suspect that not everyone who uses the phrase “panic attack” actually means that their heart was racing, they thought they were going to die and thought about going to the emergency room. I also suspect that not everyone who uses the word depression to describe their mood has trouble with daily activities like showering and brushing their teeth. Please, don’t get me wrong, I know that many people suffer and suffer quite silently or we wouldn’t lose famous people to suicide and drug overdoses as often as we do. I simply think that phrases and words like panic attack, depression, social anxiety are incorrectly and way overused.
The point, I want to make though, is can you ever imagine a time when people (lots of them) would casually throw out that they have schizophrenia? No, you can’t. Schizophrenia is like crossing a line. Depression is acceptable, anxiety is acceptable and isn’t that bipolar disorder the one that makes you so creative? I am so tired of reading people’s essays, and books where they say, “At least I don’t have schizophrenia.” Well, an article came out today (link here) that claims that research shows that ADHD, bipolar, schizophrenia, major depressive disorder and anxiety disorders share a lot of similarities genetically.
I’ll be waiting for the day when people are also self-diagnosing themselves with schizophrenia the way I suspect some of them do with anxiety and depression, and that schizophrenia is openly talked about, acceptable, and almost the cool thing to be. If current attitudes are any indication, I will probably be waiting a long time, but still, I will be waiting.
Over the past two weeks, the public learned of three celebrities who are, or were, living with bipolar disorder, and rather than the media using this as the perfect time to educate people about mental illness, the cause of it, the symptoms of it, the available treatment options, many people fell back on stigma.
Many people questioned how Kate Spade could be so selfish as to take her life when she would be leaving behind a daughter, and I read a lot of misunderstanding about her “having everything.” These statements assume that Kate Spade was in her “right mind.”
Depression is not only the thief of joy it is a liar. Depression tells many people that their loved ones would be better off without them. Depression is more than just a feeling that a jog, trip to the spa, or a lunch with friends, can help someone overcome. It is a chemical imbalance in the brain. It is not weakness, just like schizophrenia, it is a brain disease.
I heard a report that Kate had been self-medicating with alcohol for some years and that she didn’t feel like she could get help because of the impact that attention would have on her brand. That is the stigma, and it costs us the lives of people. The tragedy that ended Kate’s life might have been different if we were more educated, accepting, and open about the realities of mental illness.
On the other end of this, is Kayne West admitting that at 39 he received the diagnosis of bipolar disorder and that bipolar disorder is his superpower. I don’t know the details of Kayne’s illness, but I do know what romanticizing mental illness is and what it sounds like and that is what Kayne is doing. Having received a diagnosis of bipolar disorder in my twenties, the first thing I did was to read about all the “creative geniuses” who have and had it.
I thought that my creativity was a symptom of bipolar disorder. All these years later, and with a diagnosis of schizophrenia now, I don’t believe my creativity comes from my illness. I think I would have been far more successful in this life if I didn’t have to manage and deal with a brain disease – it impacts me every day, and it is disruptive and hinders me from my full potential.
Then there was Rosanne Barr and her racist tweet. I am sorry that Roseanne Barr has bipolar disorder, I am sorry for every single person, famous, or homeless (it doesn’t matter) who has to deal with the consequences of a brain disease, but Rosanne made mental illness look like a character flaw. Being bipolar doesn’t excuse racism, and it doesn’t create it either. Bipolar disorder can hinder impulse control, cause disordered thinking, cause delusions or strange beliefs, but a diagnosis doesn’t automatically mean you will be a racist – that has to do with character and personality and isn’t a symptom I have heard of regarding any mental illness.
I don’t know everything about mental illness, statistics and my experience are all I have to form conclusions. I do know that when mental illness is in the news this much that the media rarely helps us out with educational and stigma-busting information.
In the weeks since the school shooting in Florida at Stoneman Douglas, we are once again talking about mental health and the treatment of people with mental illness. President Trump has called for more mental institutions, as one of his solutions to the problem of mass shootings. And last week, Attorney General, Jeff Sessions, said that communities need to have the option of involuntarily committing mentally ill people to reduce crime.
As someone with paranoid schizophrenia, who could be impacted by sweeping law and policy changes, what do I think about these two powerful men and their statements? I think they are both right in their proposals, but the information or assertions that lead to these proposals are inaccurate, based on faulty reasoning, reactionary, and wrong.
President Trump is correct that we need more long-term psychiatric beds in every state in the union. According to The Treatment Advocacy Center in 1955, there were 558,239 psychiatric beds in the United States, and as of 2016, there were 37,679. What does this mean? It means people who are experiencing a mental health crisis may not find a bed, or they may go on a waiting list that has them waiting as long as a month or more for the type of treatment they need.
Attorney General Jeff Session is correct that we need a better system to get people into hospitals. Under the current system, a person must be a danger to themselves or others to be involuntarily committed. As someone who has been psychotic, and in need of treatment that I did not trust (due to paranoia), and I lacked insight into my condition based on a symptom called anosognosia. An involuntary commitment would have helped me get the treatment I needed much faster. When someone is psychotic the length of time that they are psychotic matters regarding recovery, treatment, and the likelihood of future episodes. In other words, the sooner someone gets treatment, the better.
So, all is well in Washington DC regarding attitudes towards mental health? Right? Wrong. The fact that a mass shooting led to these proposals is troubling at the least and harmful at worst. The statistics do not back up either one of these responses to gun violence. According to the American Mental Health Counselors Association, only 3 to 5 percent of all violence (including firearm violence) is tied to severe mental illness. In the same article, on their website, AMHCA reports that people with severe mental illness are twelve times more likely to be the victims of violence (including firearm violence) than the general population.
It is easy to blame the mentally ill it is a simple and clean and for most people, perfectly sensible cause of violence. But it isn’t truthful, and the number of people those myths hurt is on the rise every year. According to the National Alliance on Mental Illness (NAMI) one if five American adults will experience a mental illness, and ten million adults in America live with a serious mental illness. So, are these repeated stereotypes about mental illness and violence hurting someone? Yes, they are hurting a large portion of the adult population in America. They are keeping people from treatment (don’t want to admit I have a mental illness) and keeping people from jobs (people don’t want to hire someone who they believe (although inaccurately) is prone to violence).
We need solutions to mass shootings in America. We also need solutions to mental health in America, but the two things are a separate conversation and tying them together destroys life and productivity; it costs our society and individuals way too much. It’s time to get serious and untie the myths so we can make room for change.
This morning my husband handed me a copy of the February 12th issue of Time magazine that he had opened to a story. “Read this and let me know what you think,” he said. The title of the article is, “Her Mother’s Mind.” It is about a photographer, Melissa Spitz and the pictures she takes of her mother and posts on Instagram (apparently she has over 14,000 followers). Melissa’s mother has the diagnosis of paranoid schizophrenia, bipolar disorder, depression and substance abuse. Melissa has posted over 6,000 pictures of her mother online, the account is called, “You Have Nothing to Worry About.”
I haven’t seen the Instagram account, but I assume Time magazine tried to pick some of the pictures they thought were representative of the project. There are six photographs in total. The largest photo is the photographer in the mirror with her mother. Her mother has clips and rollers in her hair and is putting something on her bare face (lotion, or something). The photographer is slightly in the background with her camera. Two of the pictures are of Deborah (Melissa’s mother) smoking – one in a car and one in a chair with a blanket full of what I can only assume are cigarette burns.
Let me just say that I hate this project. I find it exploitive in every way. First, I think Deborah looks like an average woman; except one image where she is in what appears to be a hospital bed with her arms stretched toward the ceiling. People can disagree with me on this, and I’m sure some do, but I think this is the worst form of sensationalizing mental illness. I had some pictures of me when I was psychotic, and they haunt me. I look lost, I look far away, and I look ill. Is that how I look today? No. Would I want those pictures posted online for everyone to see what a “crazy” woman looks like? No.
The article says that Deborah occasionally asks Melissa if the photographs are really helping people and Melissa tells her yes. There is a quote in the article from Melissa, “This is my way of coping, of making art out of chaos.” It sounds to me like the project has more to do with the photographer and her wants, dreams, desires, etc. than it does with Deborah whose most vulnerable and intimate states are made public.
I have a picture on my desk of my husband and me in Paris. My husband’s hair was long and is standing on end because of the wind. He is wearing a black winter jacket, and I am wearing a pink one. We have our arms around each other, and we are smiling. I love this photograph taken almost thirteen years ago. It was taken at a time when we still thought I had bipolar disorder.
Our lives would change so much with the diagnosis of paranoid schizophrenia, and I’m not sure of all the reasons why. I never had issues with anxiety back then, and I certainly didn’t have to take medication to relieve it on a daily basis. In fact, I took a very small dose of an antipsychotic and that kept me relatively symptom-free for seven years.
Now, I take an antipsychotic and an anti-anxiety medication. My doses are higher, as well. I know that the symptoms of schizophrenia can change over time, and I am sure that is part of my issue, but I think the biggest part of my problem (except the added anxiety) is the way we lived with and dealt with my mental illness when we thought I had bipolar disorder.
This whole thing just occurred to me today, and I think I am right about some of it. The symptoms I know that have gotten worse as I’ve aged are anxiety, a lack of motivation, and the desire to isolate socially. I can’t deny or change that these things have become increasingly prevalent in my life and have impacted my quality of life. But those things alone are not enough to account for all the changes in my lifestyle since the picture in Paris was taken.
I think the actual diagnosis of paranoid schizophrenia has changed the way my husband and I live and responds and take care of my illness. The last time I was psychotic was so traumatic for both my husband and I that I think both of us would do anything not to go through a similar episode (it lasted six months and almost led to our divorce). I was on the verge of losing everything I care about during my last episode. It was not only frightening to be psychotic and eventually suicidal, the real world consequences (outside of my brain) were significant. I know my husband feels the same way. My last episode was heart-wrenching and terrifying for him as well, and like I said it lasted six months. Six months is a long time to deal with something painful and scary.
I haven’t talked to my doctor about it, but I will the next time I see him, but I am wondering if my husband and I have a form of PTSD caused by my last episode of psychosis. It may sound like an over-reach to call it PTSD, but I am serious. During my last psychotic episode, I left home. My husband was able to track me from my credit card but could never quite catch up to me. I eventually came home, and when I did, I thought I wanted to get a divorce. My husband believed that we were in the process of separating from one another. Then for the next six months, we lived together with me actively trying to untie our finances from one another and talking to God, Jesus and the Holy Spirit (I wasn’t praying, I heard voices).
It was after that last psychotic episode that I was diagnosed with paranoid schizophrenia. My husband and I didn’t know any more than most people about what paranoid schizophrenia is, what it meant for me or us as a couple, the symptoms, etc. All we knew was that the doctor who diagnosed me considered it “bad news,” Because that is how she told me, “I have some bad news for you…” And my husband and I have considered it “bad news” ever since. Not the worst news, not horrible news, but bad news.
So, considering the emotional trauma of those six months and the way the doctor presented my new diagnosis to me, is it any wonder that my husband and I go to great lengths to keep me from having another break? No. It is no surprise. The thought of another break is terrifying to both of us and threatens the life we have built together. So, I think we have gone overboard on keeping me from feeling stress both emotional and physical.
In other words, I think I am stronger than either of us know. And this realization is going to change the way I live my life from this day forward.
*I am not referring to the horrible and tragic stories where family members have tried again and again to get a loved one help and have been unsuccessful (those stories need to be told over and over until we can change the system).
It seems remarkable to me that there is still stigma and stereotypes that are so prevalent surrounding mental illness. I feel like everywhere I turn someone is writing a memoir, essay or novel with a mentally ill character. The most common stories involve a child of a mentally ill parent or a parent of a mentally ill child. The stories an adult child of a mentally ill parent can tell are very different than the stories someone can tell about themselves. The same is also true when parents write about their children.
I understand how scary a mentally ill parent’s episode of psychosis can be to a child. I also understand the grief associated with having a child go from one level of functioning to another, but somehow other stories need to be told as well. I’m not saying these stories aren’t important or true, only that they seem to be the most common narrative. Many of them lack originality and don’t further our understanding of the range of what people with a severe mental illness are capable of doing, being, contributing.
I know with mental illness comes pain, sorrow, suffering. I know that those things do not just visit the person with the illness. I know these stories can interest a reader, but I think we need to advocate for and support writers who have a severe mental illness and help them tell their stories whenever we can (if you love someone with schizophrenia or schizoaffective disorder, please encourage them to write). Even with the surge of writers brought on by the Internet and digital culture, I feel like there still aren’t enough people who have a severe mental illness telling their stories, what their lives are like and their successes, dreams, etc.
It’s frustrating that editors seem to either love the “feel good story” or the “sensational story.” When I say a “feel good story,” I mean that I or someone else is an inspiration to others rather than just a common person doing their thing. When I say “sensational,” I mean that the editor wants me to include the details of hallucinations, delusions, etc. even though that isn’t always a huge part of having schizophrenia. It is the worst part, I will admit, but not always the most frequent symptoms especially if the person is on antipsychotics and isn’t medication resistant.
I will do my part to get more stories out there. If you have a unique story, or your loved one has a unique story, I will share resources with you to help get you/them published. We can either communicate via Skype or e-mail. Hit me up; I’ll help if I can. Let’s change this narrative and give a broader perspective of severe mental illness.
I have read many blogs and books by people with schizophrenia, and many of the writers express a desire to date and eventually get married. Unlike me, there are many people with schizophrenia who live in hiding (not disclosing their illness for fear of the consequences), and many of those people are married. I assume their spouses must know of their illness even if most people in their lives don’t.
On the other hand, I am open about my schizophrenia, and I am married, but it may not be like someone would assume. I was married early in my twenties and divorced before my first psychotic break. I don’t think my first husband would have stayed with me and worked with me if he had experienced my illness. (I say this not knowing for certain because he never had that opportunity, chance, test, whatever it is someone would call it).
I met my second husband after my first psychotic break, but at that time my diagnosis was bipolar disorder. If we had both known at the time that my true illness was paranoid schizophrenia, would we have made it to our wedding? I don’t know. I can’t say. I wasn’t diagnosed with paranoid schizophrenia until I was in my early forties. By the time I had the correct diagnosis my husband, and I had been together for at least ten years.
During ten years of marriage, my husband had grown to know a lot about me. The diagnosis of schizophrenia came as a shock to us, and I suppose it could have caused some people to throw their relationship away, but not us. When I received my diagnosis, I had just started to recover from a six-month episode of psychosis. Our marriage was on wobbly ground during that period. I thought during that time that I wanted a divorce. My husband thought that is where we would end up – in front of a judge with a no-fault divorce.
Once I was on medication and started to return to my old self, my husband started to heal from the injuries I caused him during my psychosis, and he started to understand the difference between schizophrenia and me. I am one person when I am on the right medication and someone quite different when I slip into psychosis. This period is where I find my husband to be remarkable. Not while we were dating and thought I had bipolar disorder, but when he had lived with me as someone who was psychotic for six-moths and received no love, or understanding, or connection from me, and then, when I recovered, he stayed and helped me rebuild my life.
Even though my husband and I had a whole history together before discovering I had schizophrenia, I think it is possible for people to find a lifelong partner if they already know that they have schizophrenia before meeting their potential mate. I think having the opportunity to get to know each other is the critical step in the process. Two people need to have some feelings and history together to be able to navigate and process a diagnosis of severe mental illness.
I think the same is true for making new friends. If those of us with schizophrenia let people get to know us a little bit before we tell them our diagnosis, then they will have already developed their impression of us, and first impressions are powerful. Many people meet me, and they know about my schizophrenia before even shaking my hand because other people have told them and many saw an article about me in People Magazine a couple of years ago.
I would prefer that people get to know me before they know my diagnosis, but I don’t always have control of that. I think if you do have control over when and where to tell someone about your illness that it is beneficial to wait until they see who and how you are so that stereotypes and stigma don’t overpower their decision to stay in a relationship.
Everything that is possible for people without schizophrenia is possible for people with schizophrenia we just have to be more creative to make some things work.