Tag Archives: diagnosis

Look at The Big Reveal: Going Public With My Diagnosis

16 Saturday Dec 2017

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

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We are in the midst of the holiday season, and I am looking forward to the new year. 2017 was tough on my husband and me. My husband had four or five serious medical problems (not life-threatening of course, but terrifying as he had two occasions with fevers over 103). And I had two incidents of diverticulitis and a breast cancer scare that lasted most of the year (almost over now). But there is something different about this year than any of the others I have lived.

Since I went public with my diagnosis, I am more comfortable with myself. I am more comfortable with being who and what I am in almost every situation. Even with all the stressful medical situations, and even with all the bad news out of Washington D.C., I laugh louder, harder and more frequently than ever before ( I cry a lot, too, but that is common for me – I have a very soft heart. For example, I cried when Al Franken resigned his Senate seat because I like him and I have thought of him as a fierce fighter on issues I believe in. I also cried when John McCain received his diagnosis and when some famous people passed away). Anyway, it is no big deal, but I cry easily, the great thing is, I laugh easily, too. I have a big laugh. I have a belly laugh. I have a very distinct laugh that turns heads in a room. I love laughter. I love when people laugh, and I love when I laugh. And since opening up completely about living with schizophrenia laughter is more common than ever around here.

People frequently tell me they live in the closet and are afraid of coming out because of the consequences it might have on their job, and relationships. The stigma around schizophrenia is all too real, but for me, coming out is one of the best things I have done in my life. I feel whole, and I feel free. I wouldn’t recommend being open about living with a severe mental illness with everyone, (I don’t tell everyone, but anyone can find my articles about it on the Internet). But most people who know me or have any contact with me on social media know that I have schizophrenia. I am not hiding. Are their consequences for me? Yes, I think there are. I don’t know when I apply for a job if people are discriminating against me – it is possible that they are. I don’t know if people talk behind my husband’s back and work about his “crazy” wife. I assume it can, and possibly does happen. But for the most part, people are kind, and open, accepting and compassionate toward me.

For the first time in my life, I feel free to open up a conversation about mental illness and talk about the issues, the struggles, my diagnosis, etc. I don’t feel like I am keeping more than half of my life hidden from all of the people around me. Keeping that big of a part of myself secret for so many years left me feeling distant and disconnected from other people. Now, I feel as if I am all in, and completely myself. I know not everyone has the luxury to risk what I have, and I wouldn’t want everyone too, but for me, I’ll take the increased laughter and lightness of being even if it means the occasional stab of stigma, judgment or pain.

 

Schizophrenia Doesn’t Equal Crazy

02 Monday Oct 2017

Posted by in mental illness, schizophrenia, Uncategorized

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I have schizophrenia but in no way am I crazy, unless you want to say, that I am crazy for my husband or crazy for sweet potatoes. That is a fairly common, but not derogatory use of the word. There are so many uses of the word crazy that it is difficult to think of the word as a slur against those of us with a mental illness. In fact, in most cases, the way most people use the word, it isn’t a slur, it is simply a common word that gets used a lot.

Today I mean it as a slur though. Once again, I will say, I have schizophrenia, but I’m not crazy. Crazy is what the man in Las Vegas did today. That is out of this world, crazy. Apparently, they can’t find a history of a mental health issue with him. But what I’m saying is that doesn’t matter. People with a mental illness are not necessarily crazy, and people with no mental illness can be crazy. He is the latter. His actions are the epitome of the word crazy. That man was not sane: Sitting in a hotel room armed for combat and taking aim at innocent people enjoying a concert is crazy (along with horrific).

I’ve been thinking about the use of words since Trump started running for president. For over a year, people have been throwing around diagnosis after diagnosis of Trump. As a mental health advocate, diagnosing public figures bothers me. It took over ten years for doctors to give me the proper diagnosis. It isn’t a hard science, or should I say it is a hard science – it is extremely difficult to diagnose some people and some illnesses.

People have claimed that Trump is a Psychopath. I have read that he is a Narcissist. I have read that he is a Malignant Narcissist. There are probably a few other mental illnesses that he has been diagnosed with by op-ed writers, psychiatrists, psychologists, and lay people. I don’t know why so many people are so eager to give a diagnosis to Trump.

What will a diagnosis do to change anything? Will it make him tweet less about North Korea, putting us all at risk of a nuclear war? Will it change the way you see him? Will it change the way I see him? More importantly, will it change the way Congress sees him? Obviously, many people think Trump is crazy. But crazy does not equal mental illness. That was proved in Las Vegas today. Someone can be crazy and not diagnosably mentally ill. I don’t know if Trump has a mental illness. I am not qualified to say, and neither are most of the people diagnosing him. If you want, you can say he is crazy, though. That is something separate and different from mentally ill.

I don’t identify with the word crazy. I am mentally ill, but the word crazy doesn’t apply to me.

 

The Many Faces Of Shame

13 Wednesday Jan 2016

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

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All of us imagine, create, and play out all kinds of scenarios and information in our minds that will never happen. We often hold onto beliefs that simply aren’t true, but we are afraid to test them.

For over twenty years I was afraid to reveal my diagnosis. I thought that people would avoid me, I would lose my job (I don’t currently have one), I would be treated differently, and that people would stop trusting my judgment and push my ideas and input aside as someone who is “crazy.” Most of these things haven’t happened, and if they have, it hasn’t been noticeable to me.

I was living with shame.

My husband said that I have gained a significant amount of self-confidence in the time since I came out. I have to say, I feel stronger because my head is not down, and I am not using all that energy to keep people from finding out my secret.

I have noticed this same type of avoidance and secret keeping in other people, and it isn’t just in marginalized populations like LGBTQ, or the mentally ill. People hide other things about themselves, too. One such secret that I see people in my personal life try to keep is the fact that they came from a lower class (economically).

There are people in my life who have become upper middle class, and they are constantly trying to make people believe that they know everything about fashion, food, wine, and the “finer” things in life. They do everything they can to separate themselves from their upbringing.

I came from a small town, and my parents didn’t have much money. Most of our neighbors didn’t have much money either so it didn’t seem unusual at the time. I ended up going to high school overseas and traveling to many city and countries. I never severed the ties between the small town girl and the worldly woman.

I kept both with me, and I have to admit that both of them have served me very well. There are things I learned from not having much money that have made me a more responsible, compassionate, understanding, and capable person. There are things I learned from traveling and my education that have made me more tolerant, less prejudiced, more friendly, and willing to try new things.  One of the most valuable things I learned about not having much is that I don’t need or want much, and it has little to do with happiness.

Personally, I don’t feel shame about where I came from, but I know others do, and I understand the feeling even if I can’t relate to the details.

Coming out of the closet about my diagnosis has made my life better, and it has nothing to do with how other people treat me. It is about letting go of the shame. Releasing all that shame of who you are, what you are, where you come from gives so much life and energy back to you.

I feel like I have claimed me, and I have claimed my life. I feel like instead of a person who is one person in public and another in private, that I am now one stronger, more complete person.

People feel shame for many reasons. I wish they could throw out those feelings of shame and begin to allow others to accept them as they are. Most of us with bumps, bruises, cuts and injuries will welcome the parts of others that they feel are undesirable for whatever reason. Most of us have been there in one form or another, and I hope everyone has the support and desire to join me on the other side of shame because there is acceptance and freedom on the other side.  And it feels good.

 

Schizophrenia Stigmatized More Than Other Mental Illnesses

13 Friday Nov 2015

Posted by in mental illness, schizophrenia, stigma

≈ 11 Comments

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There is no comparison to be made when it comes to the actual symptoms of mental illnesses. You can’t put schizophrenia, depression, mania, or anxiety side by side and say which one is worse. You can’t do that, because all of these illnesses or symptoms look different in everyone who suffers from them. No two people have the exact same experience with a mental illness. For some people depression is the worst illness to have, and for others it is schizophrenia.

I wish that more people understood the paragraph that I just typed, because it is true, but it is far from common knowledge. I often hear people say that schizophrenia is the most severe of the mental illnesses (I have said it myself), but I no longer believe that is true. Many people with bipolar disorder have the same psychotic symptoms that many people with schizophrenia have. You can become psychotic when manic or depressed, psychosis is not exclusive to schizophrenia. Anxiety can keep people from socializing in the same way that schizophrenia can. People’s lives, and their freedom to live and enjoy them, can be significantly reduced by any mental illness.

I often see people in their twenties and early thirties writing openly about and talking about their anxiety or depression. The same is not true for their counterparts with schizophrenia. Many people with schizophrenia live in the closet. People with anxiety disorders are not portrayed by popular television or by the nightly news as mass murders. When you see movies about psych wards it isn’t people who are depressed or anxious that you see screaming, or acting in a bizarre fashion. It is people with schizophrenia. Schizophrenia is still the most stigmatized of all of the mental illnesses and people who suffer from it have to be concerned about who they share the information about their diagnosis with.

I recently asked a friend of mine, who happens to be a mental health professional, what was the question he most thought people wanted to know about those of us with schizophrenia, and he replied, “Are you dangerous? Will you hurt me?” Those aren’t the questions people think of asking those with an anxiety disorder or depression.

I am really happy that mental health has become a national conversation and that most young people suffering from depression or anxiety or bipolar disorder do not feel shame about their diagnosis. After all, it is ridiculous to humiliate, shame, discriminate, make fun of, demonize, or dehumanize someone, because they have a medical condition like thousands of other medical conditions.

I’m glad we have made progress, and that people’s lives are better for it, and that many people have the self-confidence to speak up and talk about their experiences. I only wish that the knowledge of schizophrenia would catch up to the rest of the mental health field.  I’m so tired of being seen or thought of in a way that doesn’t resemble my life at all.

Not All Doctors Have Empathy Or Understanding

26 Monday Oct 2015

Posted by in mental illness, stigma

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I belong to a blogging group on Facebook where bloggers can ask each other questions about traffic, fonts, product endorsements, etc. One blogger, a medical student, posted that she received an e-mail from someone on the Internet saying that her blog name was offensive. The blog name was a play on the diagnosis of OCD.

I am not going to reveal the name of the blog here, because I don’t need to cause myself any problems, but she asked the members of the group if they thought the name of her blog is offensive (she even said the psychiatry students thought it was “cute”). There were nearly 200 comments on this thread and some people tried to explain that, yes, the name is offensive, because it makes a very serious issue something light, fun, and playful. Most people (probably 99%) wrote that they thought people needed to stop being so sensitive, and to stop being so easily offended and basically to lighten up.

This was one clear example of trying to keep the status quo, and trying to keep a marginalized and voiceless community in their place. I don’t think anyone would dare tell a person of color that something they considered to be racism wasn’t really racism and they just needed to lighten up, stop being so sensitive and quit being offended by “every little thing.” The very act of telling a person of color those things is racism.

People don’t get to define what life is like for those of us with a mental illness. They don’t get to define what language we find offensive, hurtful or cruel. Many times in my life a person who is gay or a person of color has asked me not to use a certain word. I have always apologized, and discontinued the use of the word. I don’t try to defend myself by saying, “lighten up” or “stop being so sensitive.” I have believed those people’s experience of the world and of language. It is time to start believing people who have a mental illness.

After the medical student with the blog, asked her question about the name of her blog, she wrote, “Do you think I am just being paranoid?” I think this proves she has bigger problems than just an offensive blog name. I think she needs to go to sensitivity training before becoming a doctor. She proudly wrote to everyone in the group that she had already gone through her “psych rotation” All I can say is those poor patients.  Honestly.

Thinking The Worst

07 Wednesday Oct 2015

Posted by in mental illness, relationships, schizophrenia, writing

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I am saying the final good-byes to my husband again – I plan for it, I prepare for it. Once again, I am convinced while I am waiting for blood and urine tests to come back from the doctor that I have bladder cancer and that I only have a limited time left to live. I am the most frightened of the treatment. The last time I went to the doctor my pulse rate was 125. My doctor joked that I was running a marathon in his office. It is mostly the anxiety, but I don’t know which is worse, the anxiety, the paranoia, or always thinking the worst is going to happen.

I have planned my death many times. If I am given a grave diagnosis, I want to accomplish some things before I am cremated and sit on the night stand beside my husband’s head full of thick curly black hair that he loves to have me run my fingers through massaging his scalp with the tips of my finger nails. “It itches” he says. “It gets so hot with all this hair” he tries to explain to me, who has baby-fine hair that gets thinner every year. I want to sit in an urn beside him while he sleeps. I want to be the one who watches over him – forever and always.

If I am going to die, I want to write my husband, who reads everything I write with great enthusiasm and support, twelve letters, one to be opened every month the first year after my death. In the letters, I want to encourage him. I want to remind him that someone, me, loved him just the way that he is. I want him to remember that I never asked or tried to encourage him, or force him, to change. He doesn’t need to better himself or change to please someone. I found him to be put together beautifully – his manners, his compassion, the way he remembers how people take their coffee, the way he puts other’s desires before his own – perfect, no need for improvement.

I want him to remember those things and hold them in his mind and heart so he never feels that he must shuffle pieces of himself around to make a perfect picture puzzle in order for someone new to love him. His pieces fit together nicely and create a mosaic of color and textures that are lovable without further arrangement or trying to get a slightly curved piece to somehow fit into a slightly triangular piece – forcing a fit that will throw off the whole.

I want him to remember that we laughed every day. I want him to remember that he has known love – to be loved, to love, to be in love, he has known it all unconditionally. I want him to know that he experienced that love and laughter for almost twenty years while some people don’t have it for an hour.

I want to have a ceremony of thanksgiving with him where we reminisce about all the wonderful moments and days that made up our lives together. I want the two of us to be able to say good-bye with gratefulness for having had each other not one day, not one week, not one month, but for nearly two decades.

I want to pass from this world, at home, in my own bed, holding the hand of the man who I think is better than every other person on the planet – over seven billion of them.

I want the last kiss to be a kiss from him. I want to see his eyes as my eyes are closing. I want him to know that the story of our love was too unbelievable to write – it is just that good.

I want him to remember that someone who makes you laugh is more important than that extra ten pounds. Someone who holds your hand while you are getting tested for cancer is more important than polished toes and perfect breasts. Someone who will always offer you the biggest slice of cake or pie is more important than someone who knows all the brand names and buys them.

And when he has remembered it all, he can let it go, and give his heart again so that he can try to be a guy who wins the lottery of love twice in a lifetime.

The Beginning of Schizophrenia

16 Tuesday Jun 2015

Posted by in mental illness, schizophrenia

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I am always learning new things about schizophrenia.

Yesterday, I read on the Mayo Clinic site, that full blown schizophrenia often develops in women in their late twenties. I always thought that my schizophrenia showed up late, but I was wrong. I became psychotic for the first time at twenty eight and that is common for women who develop the illness.

Finding out this piece of information shifts everything that I knew, or thought that I knew.

I thought that I started to show symptoms of schizophrenia in high school and college. I would go through months where I know I was depressed. I didn’t get treated for it at the time, but I am certain I was experiencing it.

When we lived in Denver, during my early high school years, I used to lie on the floor, close my eyes, and wish myself away. I would do this for hours.

When we moved to Cairo Egypt, after my brothers flew back to the United States for college, I stayed in my room for over a month and read many of the books on a list that my new school said that I should have read as a junior. (I went to a college prep school and they actually held me back a year because my previous school record was so pathetic).

To say my adolescent years were turbulent would be an understatement. I was an unhappy kid. I ran away from home. I dated much older men. I didn’t play sports. I didn’t have a hobby. I didn’t have much in terms of success at that age. I didn’t even think or dream of college. I never once had a dream of what I wanted to be when I grew up. I always thought I would be dead by thirty.

The first year of college, I never hung up my clothes. I had so many clothes and I just left them in a pile on my floor. They were like a massive piece of furniture.

My second year of college, I moved in to an apartment by myself. I never unpacked anything. I lived around boxes.

I dropped out of school and ran away from college. I ended up in California. Eventually, the young man I had been dating in college (he had since graduated) drove to California to move me back to Washington.

We lived happily for a number of years. I went back to college, got married, got a degree, and eventually depression hit again. We ended up divorced. I lived on my own, and eventually I broke completely with reality.

Off medication, I have a history of terrible choices. I get depressed easily. I am impulsive. I drink to excess. Honestly, I don’t know where I would be if I never had that first episode of psychosis and received psychiatric treatment and antipsychotics.

It is strange to say, what has almost killed me again and again, may have saved me when it first showed up.