Category Archives: mental illness

A Productive Rant

Privilege, Societal Barriers, the Roll of the Genetic Dice, and the Choices We Make in Life

Rolling Dice

There are days that I find myself wanting to claw at the walls and people’s faces. Some days I feel like I am suffocating, being smothered by everything. Other days I am so fatigued that I find it hard to breath. I feel that I have to fight my muscles just to keep breathing. It is not one thing that is causing this. It is never one thing.

I realize some people would view this as me whining, that I should just be content that I even have a job at all and that I have a roof over my head. I even think I am whining. Don’t get me wrong, I am very grateful, but there comes a time when there is just too much that has been going on for too long.

Why do my kids and I continually struggle when others don’t? It really has to do with privilege, societal barriers, the roll of the genetic dice, and the choices we make in life

I chose to marry a man that turned out to be emotionally abusive and then abruptly abandoned us.  Did I know he was going to become abusive? No, not in any way.  Everyone liked him. I felt I had known him all my life. The choices he has made has caused a lifelong impact on myself and our children.   

I chose to go to college and become a teacher, something I wanted to become since I was seven years old.  I was born to be a teacher. Unfortunately, the society that I live in does not really look kindly upon teachers or schools for that matter. Lots of negativity, lack of resources, and lack of support.  

Then I chose to go back to graduate school to get my master’s degree, because I had essentially become a dinosaur in my field. I was a long-term science teacher with only a bachelor’s degree.  I needed to make myself more hirable so I could support my children better. That was my thought and when I started my master’s program, we were still a two income household. I knew that, in order to complete my original plan of completing a science education graduate program, I would need the assistance of my husband. He agreed that it was time for me to go back to school and that he would be there to help me.

Our Education System

It wasn’t even two months after I began my program when my husband left. I managed for two years without his help, but due to my learning needs, it became clear that I wasn’t going to be able to finish the program. I was attending an online graduate program from a different state.  The school would only help me if I went to the disability office on campus.  That was going to be impossible, so I decided to transfer to another school. Again, another choice on my part that was due to being put into a position that was not my choice.

I managed to find and get accepted into a different online graduate program from a different state, one that believed in Universal Design for Learning (UDL) standards and supported all students in many different formats. I graduated two years later with a Master’s in Education with a focus in Autism. 

In order to complete my degree, I chose to amass student loan debt, because, in the country I live in, college is very, very expensive.  I do not have the privilege of coming from a well-to-do family that could pay for my college education. I either needed to take out student loans or not get my graduate degree.  Neither my degrees guaranteed me a well-paying job with benefits. There are no guarantees in life. 

I also chose to become a mother, twice.  Did I know that I would have complications? No, there were no indications.  Two months of bed rest with my first child (pre-eclampsia) and four months of bed rest with my second child.  There was no warning that all hell would break loose with my second pregnancy. I was almost paralyzed. I have a beautiful son and a beautiful daughter, but my body never fully recovered after my second pregnancy. I have ongoing medical problems stemming from pregnancy complications and Ehler-Danlos Syndrome. 

I am autistic, I have Ehler-Danlos Syndrome, and I also can’t build up antibodies from vaccines. This is all due to the roll of the genetic dice.  My titer levels show no evidence that I was ever vaccinated even though I received vaccinations multiple times, even in adulthood. So, yay for me.

As a person who must rely on herd immunity to protect myself from preventable diseases, I have no patience for anyone who is an antivaxer or anyone who claims vaccines caused their child’s autism. No patience what so ever.  There is a current measles outbreak happening in my state right now.  I am appalled by the self-righteous ignorance of people. They don’t care and they think they know better.

I am digressing . . .

We moved four times in the last six years. We moved due to financial, family, work, and school reasons. Was all this moving by choice? Yes, it was by choice. It has been six years of just the three of us trying to survive.  You do what you have to do to keep going and sometimes you have to make really hard choices so you don’t end up out on the streets.

This brings me back to privilege.  Why have my children and I had to struggle for so long? 

I did receive food assistance for four years up until it was decided that I made just a little too much money. This is a societal barrier.  The problem is that, sure, I work full-time, but I don’t make a living wage.  The state took away the support I needed to feed my children.  We ration food. That is hard on the body and the mind.

I am grateful for my job. My years of teaching and my master’s degree opened the door for me to be able to work in the non-profit sector where I can help families with children with disabilities navigate the education system.  I pay it forward by helping make the world better for one person/one family at a time.  This job does not pay a whole lot, but it does allow the flexible schedule that I need to be the parent that my children need.  They have weekly medical appointments that requires a lot traveling.

I have also been homeschooling for the last five years. This was not something that we had planned on.  Homeschooling became a necessity so my children could be successful and reach their potential.  My own health needs require that I have a flexible schedule.  There are days that I am unable to leave my bed, and then there are other days that end up being a 10-hour work day. I do understand that having a flexible work schedule that allows me to work the majority of the time from home is a privilege.  

There was a time that I worked three part-time teaching positions while attending graduate school and homeschooling full-time. That lasted for three years. I don’t remember sleeping much, but I made it work. Now that both my children are part of the Home Link program, which is part of the public school system. I have better schooling support for my children and they are thriving in the alternative learning experience that is available here. I do understand that this placement is a privilege and I am grateful for it.

Even though I have find myself in a better employment and schooling situation, I find that my burnout never seems to end. I have been at some level of burnout for at least two decades.  I don’t have a proper word to describe this never-ending burnout. I do have better days, but it is a constant struggle to even move.  Life keeps going so I must keep pushing myself forward, which only drains me further. It is out of sheer determination that I can maintain my daily responsibilities, but more and more things keep getting piled on. So, I remain stoic and keep treading water. Unfortunately, a person can’t tread water indefinitely. This concerns me greatly.

Life shouldn’t be this hard. Yes, I understand that there are people who have it worse than me.  My point isn’t about my situation alone.  My point applies to everyone who has to constantly struggle in a country that is considered a first world nation and a “Leader of the Free World”.

Do you know what the United States is ranked first in?

As of 2015 the U.S.:

  • ranks 1st in prisoners
  • ranks 1st in death by violence
  • ranks 2nd in ignorance
  • ranks 14th in education
  • ranks 22nd in gender equality
  • ranks 44th in health care efficiency

U.S. Has The Worst Rate Of Maternal Deaths In The Developed World

More American women are dying of pregnancy-related complications than any other developed country. Only in the U.S. has the rate of women who die been rising.

Inequality

The US has the highest income inequality of all rich countries.

Poverty

The US has the second-highest rate of poverty among rich countries

According to a 2012 UNICEF study, 23.1% US kids live in poverty. Other studies place the number a little lower, at about 20%, but both numbers are much higher than in other advanced countries. For black and Hispanic American children, the poverty rate is even higher, at 36% and 31%.

Survival BiasI need to ask that people stop telling others that it was their choice for why they ended up in a particular situation. Poverty is a systematic problem; there are societal barriers in place that prevent many from climbing out of poverty. 

For those of us who have been trying everything to make our lives and the lives of their children better, stop dismissing us by saying that we should just be happy and grateful with what we have. No, just no. 

 

“Every inspirational speech by someone successful should have to start with a disclaimer about survivorship bias.” – xkcd comics

No one should be expected to be happy when they are struggling day in and day out.  For those who keep saying that such and such worked for you, stop!! That is survival bias, otherwise known as bootstrap mentality.

I need people to stop telling others that happiness is a choice. You are not helping Happiness is not choiceanyone. Happiness is not a choice!!  Stop telling people with mental illness and/or disability that all they need to do is choose to be happy.

For many years now I have been focusing on living in the moment, to find happiness in the moment, because my life has been very stressful despite everything I have tried to do to fix the situation. This has been going on for so long that I found myself becoming really irritable.  I had to allow myself to dive into the root cause of this ongoing irritability.  I came to the realization that I am not happy.  Even those moments that I focus on are no longer enough for me to find joy in life. My irritability has been coming from me not wanting to accept that I am not happy. I was being stubborn and didn’t want to face reality.  This brings me to the next part of this productive rant.

Both my children have been described as having anhedonia. I have found that I also have it.

What is anhedonia? To put it simply, it means the absence of joy.

The clinical definition is “Anhedonia, a term first used by Ribot in 1896, is a diminished capacity to experience pleasure. It describes the lack of interest and the withdrawal from all usual pleasant activities. Chapman et al.  defined two different types of hedonic deficit: physical anhedonia and social anhedonia. Physical anhedonia represents an inability to feel physical pleasures (such as eating, touching and sex). Social anhedonia describes an incapacity to experience interpersonal pleasure (such as being and talking to others).”  

So, what’s the point?

What is the point if you find no joy in life?

Unfortunately, I don’t have an answer to this question.

My resilience has gotten me this far. I am not the type to give up. I am a survivor.  I know that I am going to keep on moving forward.  That is who I am.  I keep swimming. 

But, I am so tired . . .

I worry about my children. I find myself crying at night, because I am afraid that my health will continue to decline so badly that I will become a burden on them.  I don’t want that. I cry at night, because I don’t know if my health will let me go back to teaching full-time in the classroom and I know that once the child support stops in 2021, my income will drop significantly. I cry at night because I wish for a better life for my children.  They did not deserve the crappy deal they got with their emotionally abusive father. I cry at night, because I don’t know what it feels like to be in a healthy, supportive, romantic relationship and I have no idea if I will ever know. It has been six years and I haven’t even started dating anyone else and that is not due for the lack of wanting to start. Just trying to survive takes precedence over dating.  I cry at night, because of my stoicism. I do not have the ability to turn it off, and even if I did, I need to remain strong for my children. They know I struggle and they worry. They don’t need the stress of seeing their mother crying. 

I am so tired . . . but, I keep swimming.

I will keep treading water for as long as I can.

I am in this place, because of privilege, societal barriers, the roll of the genetic dice, and the choices I made in life as well as the choices other people in my life made. Choices have a ripple effect not only in your life, but in the lives of others.

I ask that when you make a choice, please be mindful of the impact it will have on those around you. Even if your intent does not come from a place of malice, it is the impact that counts. The impact always carries more weight than the intent.

Intent Versus Impact: When Making a Difference Doesn’t | Miriam Barnett | TEDxTacoma – VIDEO

 

(Image sources linked to images. I do not own any of the images.)

 

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Toxic Shame – You might struggle with it and not even know it!

(Trigger Warning – Mention of suicide and abuse.)

“Toxic Shame”, just reading those words makes me cringe. I didn’t know until recently that there was a term for it, but I am very familiar with the effects and damage that toxic shame causes.  In my experience, toxic shame can cause generational damage as well.

What is toxic shame?

To answer that question, I first have to explain what ordinary shame is. According to Mary C. Lamia Ph.D. , “as a self-conscious emotion, shame informs us of an internal state of inadequacy, unworthiness, dishonor, regret, or disconnection. Shame is a clear signal that our positive feelings have been interrupted. Another person or a circumstance can trigger shame in us, but so can a failure to meet our own ideals or standards.”

brene brown

In the article, What is Toxic Shame? , it is the shame that has become toxic.  That level of shame is described as “internalized shame” that hangs around and alters our self-image. For some people, toxic shame can consume their personality. For others, the shame lies beneath their conscious awareness, but can easily be triggered.

The article further explains that “toxic shame differs from ordinary shame, which passes in a day or a few hours, in the following respects:

  • It can hide in our unconscious, so that we’re unaware that we have shame.
  • When we experience shame, it lasts much longer.
  • The feelings and pain associated with shame are of greater intensity.
  • An external event isn’t required to trigger it. Our own thoughts can bring on feelings of shame.
  • It leads to shame spirals that cause depression and feelings of hopelessness and despair.
  • It causes chronic “shame anxiety” – the fear of experiencing shame.
  • It’s accompanied by voices, images, or beliefs originating in childhood and is associated with a negative “shame story” about ourselves.
  • We needn’t recall the original source of the immediate shame, which usually originated in childhood or a prior trauma.
  • It creates deep feelings of inadequacy.

“If not healed, toxic shame can lead to aggression, depression, eating disorders, PTSD, and addiction. It generates low self-esteem, anxiety, irrational guilt, perfectionism, and codependency, and it limits our ability to enjoy satisfying relationships and professional success.”

 I understand all of this.  Shame and guilt have been used as weapons to manipulate me, to control me, to make me comply with another’s wishes, to make me submit.  It is an awful experience and it stays with you.  For much of my life I had no defense against this.  I was conditioned to be a co-dependent early on. I was taught that my needs came secondary and that I must never disappoint.  It was the end of the world if I disappointed, so I complied, much to my detriment.

Taking responsibility for things that aren’t yours (false responsibility) and toxic guilt are two things that often go hand in hand with toxic shame. A person ends up becoming overly agreeable which opens them up to being easily manipulated. Shame corrodes the person from the inside and can affect all areas of their life.

This is not something that just goes away. My conditioning followed me well into adulthood. Mix in my autistic brain insisting that “rules are rules”, my unwavering loyalty, my need to help others, my fear of disappointing people, my social anxiety traits, and my full-blown Generalized Anxiety Disorder as well as never being taught growing up how to advocate for myself (I learned as an adult) and I ended as someone who has, overtime, developed Complex-PTSD from being subjected to years and years of emotional neglect and abuse.

Keep in mind that shame and guilt are two different feelings.  Brene’ Brown, researcher-storyteller, explains in her TEDtalk – Listening to Shame:

Shame is a focus on self, guilt is a focus on behavior. Shame is “I am bad.” Guilt is “I did something bad.” How many of you, if you did something that was hurtful to me, would be willing to say, “I’m sorry. I made a mistake?” How many of you would be willing to say that? Guilt: I’m sorry. I made a mistake. Shame: I’m sorry. I am a mistake.

I was not the way they wanted me to be.  My masking took a huge toll on me, but, in my mind, I had to comply. It was how I avoided the shame and guilt trips.  If I just complied, then I was spared the emotional gut punching. By complying and trying to please, maybe I could feel valued and not worthless, at least for a little while.  If I objected in anyway, advocated for myself in ways that contradicted them, and/or insisted on maintaining my personal boundaries, then the shaming would begin. The shaming is still happening, but instead of complying, I get angry.

My neurology and my ability to parent have been attacked for years.  This started when I had had enough and drew a metaphorical line.  I wasn’t going to tolerate being treated like that anymore.  I should never have had to fight those closest to me in order to have my individuality and identity, but I did fight for over three decades.

How does toxic shame become generational?

Parents can unintentionally or intentionally transfer their shame to their children through verbal messages or nonverbal behavior. If they were subjected to toxic shame, then they might project that shame onto their own children and the cycle continues. This is even truer when a parent has an untreated personality disorder or untreated mental health issue. Some examples of this include: a child might be feeling unloved in reaction to a parent’s depression, absence, indifference, or irritability or feel inadequate due to a parent’s competitiveness or over-correcting behavior.

Toxic shame makes it very difficult for a person to accept themselves. A person can find that they hate themselves, that they feel absolutely worthless and have no value what so ever. If this person is also autistic who is trying to live in a world that is not designed for them then that feeling of worthless and emotional pain only grows exponentially.

Up to 50 percent of autistic adults have considered ending their own lives, a rate two to three times that seen in the general population (1).  There was a time that I wanted to die.  I wasn’t suicidal. I just wanted my physical, mental, and emotional pain to end – more on that here.

According to Luna Lindsey:

Shame sends two of these three messages: 

  • I am intrinsically unacceptable which will make me always be alone
  • I am inherently unfixable and therefore will always be a source of trouble for those who do love me.

And shame (and resulting anxiety and depression) causes so much pain, that the third ingredient is an easy leap. After suffering long enough, suddenly death seems like a relief.

Luna continues on and suggests some possible solutions:

Affirmations – “For starters, when I feel this way, I often find relief from reading the well-crafted and autism-specific affirmations by Liane Holliday Willey which are posted on the WrongPlanet forums. These work most of the time, except for when, for whatever reason, I’m feeling overly cynical and don’t believe them.”

Self-Acceptance – “Because of these differences, there are many behaviors that will always be difficult or even impossible for NTs to accept, and you have to accept that, too.”

Identify your strengths (Aspie Superpowers) – “These are examples of how ASD makes you particularly awesome. They are the other side of the coin, your X-ray vision to the kryptonite. For examples, see the two links at the beginning of the paragraph. Come up with your own list. During shame-filled times, go over them and remind yourself of your strengths.”

Consider coming out –According to Brené Brown, shame requires secrecy, silence, and judgement to survive. Without these things, it will die. Consider finding a safe space, free of judgement, either with safe family, or safe friends, or with a therapist, or online at a place like WrongPlanet. Bring your shameful moments to light. If you feel judged, then go back into your shell until you do find someplace safe.”

To close, I would like to share a poem by Tara Brach, Radical Acceptance:

May all beings

Heal and awaken

Into the love and awareness

That holds and honors

The fullness of being.

(Poem found at The Power of Mindful Empathy To Heal Toxic Shame)

 

References:

  1. Segers M. and J. Rawana Autism Res. 7, 507-521 (2014) PubMed

Talking About Mental Illness – Society Needs to do Better

Content Warning: Suicide and suicide thoughts.

Whenever a celebrity or well-known person commits suicide, suicide hotline information is plastered all over social media. 

Feeling depressed? Reach out! Call this number!

Know someone showing these signs? Reach out!

I am not disparaging the need for these types of hotlines.  Many people can find help through them. In 2015, John Draper (PhD, Director, National Suicide Prevention Lifeline Member, SPRC Steering Committee) reported that in the ten years since the Lifeline began, their centers have answered more than five million calls from people in suicidal or emotional crisis.  

National Suicide Prevention Lifeline – 1-800-273-8255 or Chat

En Español – Nacional de Prevención del Suicidio – 1-888-628-9454

For Deaf & Hard of Hearing  1-800-799-4889

The problem is, how many people didn’t or won’t call? How many children and adults don’t call and continued to suffer in silence, because the people they did reach out to dismissed them or they didn’t feel safe enough to reach out at all? How many kept silent, because they didn’t know what to say, didn’t want to burden their families, or because they were raised not to say anything at all?

According to the CDC, in 2016, nearly 45,000 Americans age 10 or older died by suicide. Yes, as young as 10 years old. Suicide is considered the 10th leading cause of death and is one of just three leading causes that are on the rise.  Researchers also found that more than half of people who died by suicide did not have a known diagnosed mental health condition at the time of death.

According to The State of Mental Health in America, 1 in 5 Adults have a mental health condition. That’s over 40 million Americans; more than the populations of New York and Florida combined. Youth mental health is worsening. Rates of youth with severe depression increased from 5.9% in 2012 to 8.2% in 2015. Even with severe depression, 76% of youth are left with no or insufficient treatment.

From the Anxiety and Depression Association of America, ADAA:

“Anxiety and depression are treatable, but 80 percent of kids with a diagnosable anxiety disorder and 60 percent of kids with diagnosable depression are not getting treatment, according to the 2015 Child Mind Institute Children’s Mental Health Report.”

“Anxiety disorders affect one in eight children. Research shows that untreated children with anxiety disorders are at higher risk to perform poorly in school, miss out on important social experiences, and engage in substance abuse.”

In Spokane County, Washington State, the youth suicide rate more than doubled from 2013 to 2016. It went from 4.3 per 100,000 people 24 and younger to 10.7, Washington State Department of Health data show.  It was reported that nearly 20 percent of Spokane County’s eighth, 10th or 12th graders have seriously considered suicide, according to the Spokane Regional Health District. In 2016, the last year data was publicly available, 15 percent reported that they made a plan to do so. Chris Moore, a student services coordinator with Spokane Public Schools, says suicide attempts are spiking as well, even among kids in elementary school. “We’ve seen a drastic increase with the number of attempts,” Moore says. “It’s a public health crisis. It really is.

For more information – As youth suicide rates surge in Spokane, school officials search for answers

My family has a long history with mental illness on both sides. Then there is my ex-husband’s family.  Various forms of anxiety and depression, PTSD, Bipolar, alcoholism (which is considered a mental illness according to the AMA and the APA – it’s all there based on information spanning five generations.  

For more information – Anxiety and Depression Association of America – Facts & Statistics

My sister-in-law, who I will never have the opportunity to meet, violently committed suicide with a gun when she was 21 years old, three weeks after her son was born.  He will never know his mother.  He is now older than she was when she ended her life. His father raised him on his own. 

My brother-in-law has struggled with depression all his life and has been slowly killing himself with alcohol and drugs. He is in his fifties and he doesn’t expect to outlive his parents. He can’t hold on to a regular job and lives most of the time with his parents and some of the time with his girlfriend. 

My ex-husband has also struggled with depression all his life, but has refused treatment.  His untreated mental illness and his untreated personality disorder ripped our family apart, twice.  He ran from life instead of facing his problems.  He couldn’t deal with his demons, so he pushed his family away and went into isolation with his seven guns and his paranoid ideas.

My ex-husband came from a family who doesn’t talk.  My ex was raised to believe that it was a sign of weakness to talk about your emotions and to ask for help.  Instead, he buried his demons, walled himself up, and went emotionally flat lined to the outside world. The reality is that he can’t handle his emotions, he fears them.  He is emotionally stunted, a 45 year old man emotionally stuck somewhere between a 12 year old boy and a 17 year old teenager.  Our children are actually more emotionally mature than he is.  My sister-in-law killed herself when my ex was only 17 years old and that is where he stopped growing emotionally as a person.     

My son, who is now 15 years old, was diagnosed with depression and anxiety when he was six years old.  He was diagnosed with Autism a year later.  Autism is a developmental disorder, not a mental illness.  My son was on suicide watch twice when he was 11 years old due to his father’s behavior.  My ex had fallen into a major depressive episode, the worst I had seen him be in. He refused to get help.  He neglected and then abandoned his children resulting in my son developing PTSD.  My son was never suicidal, but he had given up hope in life. He saw no point in life any more.  My son still struggles with depression.  He is on medication and goes to weekly counseling sessions. 

My daughter was diagnosed with Bipolar when she was only eight years old.  She has been on medication ever since. She was diagnosed with Autism two years later at the age of 10.  She is now 17 years old.  She was hospitalized when she was 15 years old due to going into psychosis.  She had been essentially stuck in a depressive state for some time and then had a breakthrough manic state.  The combination sent her into psychosis.  The voices told her she had to hurt herself with a knife and then the voices told her to use fire.  She never did and insisted that she could keep fighting the voices, but we managed to convince her to go to the hospital where she stayed for a week in the youth psychiatric ward.  Three months later a space opened up at a long-term treatment facility for youth.  She went into long-term care as an outpatient for three months.  Her medications were straightened out and a new treatment plan was developed for her to be used by her counselor, occupational therapist, and her speech therapist.

Then there is me.  I was diagnosed with Autism after my children were at the age of 36. 

Depression and mainly anxiety have been a part of my life for as long as I remember, but no one talked about it.  I didn’t have the words I needed to use growing up to describe why I felt the way I did.  I was told to lighten up, to stop taking things so seriously.  I was yelled at if I cried.  I was conditioned to not show emotions or to ask for help.  I was also conditioned that my needs didn’t matter.  I was on my own and told to take care of my younger sister who was only two years younger than me.  Alone, that was how I felt for so damn long.  No one listened when I tried to reach out, so I stopped reaching out.  I withdrew into myself, which only isolated me more, because my family either didn’t know what to do with me or took it personally that I had withdrawn, so I was ignored.  I was an undiagnosed autistic child with undiagnosed mental health issues. 

I grew up in a toxic home, but I didn’t realize it.  All I knew was something was off, but I never could figure it out.  I was told I was loved, but I felt so alone and I was scared.  I felt silenced.  What I wanted never seemed to matter.  I was conditioned to comply.  I had no idea how to say “no” or how to advocate for myself.  I was to comply with the wishes of others and rules were rules.

I didn’t know anything about emotional abuse until I was required to take a class for my professional certification as a teacher.  Even then, my mind just couldn’t accept that I had come from an abusive home life.  No, it couldn’t be.  There were other reasons for the behavior, always an excuse, excuses I had heard as a child growing up, excuses I was taught to just accept without question.     

By the time I took this class, I was already married and a parent.  I also hadn’t realized that I had married into an emotionally abusive marriage.  I married what I knew.

For more information – Invisible Scars – A Tale of Emotional Abuse

About 15 years ago, I went through a horrible medical trauma that was made worse by my family’s behavior.  More information can be found here – The Volcano is Awake. There was a time that I wanted to die so the pain would end, but I was never suicidal. I reached out for help so many times, but I was told get over it, bury it, move on.  I would reach out and get a cold shoulder or a back turned to me.  I had to get myself through that dark time of my life on my own and I would never wish that torture on anyone.  What got me through was that I couldn’t leave my children without a mother.  They were only a baby and a toddler at the time and something inside me kept saying that there was no one else to take care of them.  It was my responsibility as a mother that pulled me out and in the process “mama bear” emerged.  I had reached my breaking point, but never fully broke.   I became stronger, but in the process of working my way out of the darkness, I learned I had developed Complex – PTSD.  

Reach outWhen my marriage ended, I once again reached out for help, but was met with the same cold shoulders and told to move on, get over it, stuff it away. As with my medical trauma, I was not allowed to grieve in the way and for the length that I needed to.  I had become an inconvenience, a burden, again.  Once again I found myself alone with two children, teenagers now, and I had to get through the emotional pain of having my family ripped apart, but this time I was going to do things on my terms.  By this time I had learned about self-advocacy and self-determination.  I drew the line and held those boundaries. 

I reached out to others outside my family.  It took time, but I eventually developed a support network that is primarily online.  I am in a better place now, but my children and I are still grieving.  We are getting there, though.  We are much better than where we were a few years ago, but the depression is still there.  It has never fully gone away and I don’t know if it ever will. 

I have tried to create an environment where my children can feel safe talking about how they feel. I want them to feel that there is someone who will listen to them, who feels their voice is important, and who will never give them a cold shoulder and tell them to get over it and move on.  I remind them often that they each have a whole care team rooting for them.  I want them to know they are not alone.   

There is still too much stigma around mental illness. In 9 Ways to Fight Mental Health Stigma, Laura Greenstein states, “Stigma causes people to feel ashamed for something that is out of their control. Worst of all, stigma prevents people from seeking the help they need. For a group of people who already carry such a heavy burden, stigma is an unacceptable addition to their pain. And while stigma has reduced in recent years, the pace of progress has not been quick enough.” 

As a society, we need to do better.  We can’t just post about a suicide or crisis hotlines only during a time when a celebrity commits suicide.  We can’t just think posting these hotline numbers are enough. 

What is mental health stigma?

Mental health stigma can be divided into two distinct types:

  • social stigma is characterized by prejudicial attitudes and discriminating behavior directed towards individuals with mental health problems as a result of the psychiatric label they have been given.
  • perceived stigma or self-stigma is the internalizing by the mental health sufferer of their perceptions of discrimination and perceived stigma can significantly affect feelings of shame and lead to poorer treatment outcomes.

How can we eliminate stigma?

People tend to hold negative beliefs about mental health problems regardless of their age, regardless of what knowledge they have of mental health problems, and regardless of whether they know someone who has a mental health problem.

 “The fact that such negative attitudes appear to be so entrenched suggests that campaigns to change these beliefs will have to be multifaceted, will have to do more than just impart knowledge about mental health problems, and will need to challenge existing negative stereotypes especially as they are portrayed in the general media.” – Graham C.L. Davey, Ph.D

According to National Alliance on Mental Illness (NAMI), stigma harms the 1 in 5 Americans affected by mental health conditions. It shames them into silence and prevents them from seeking help. People need to feel safe talking about mental illness, so here I am talking about mental illness in a public forum.  I do not feel shame.  I do not feel embarrassed. I am not a burden. I refuse to be silenced.  I want people to know that they are not alone. End the stigma!!

Educate Yourself and Others – Learn More

“Everyone knows a little about mental health issues but knowing the facts can help you educate others and reject stigmatizing stereotypes. They are not the result of personal weakness, lack of character or poor upbringing. Understanding mental health isn’t only about being able to identify symptoms and having a name for conditions, but dispelling false ideas about mental health conditions as well.” – NAMI

Ableism in Society – Autism and Mental Illness

Last week my, children and I attended a traumatic brain injury symposium.  I attended for work purposes, but it ended up resulting in so much more.  If you have read my previous blogs, you would know that both my children and well as myself are autistic.  My daughter also has bipolar, more specifically, Juvenile or Early-onset Bipolar Disorder.  She was officially diagnosed when she was eight years old, two years before her Autism was officially diagnosed.  In hindsight, her autism was obvious from the very beginning, she was even tested twice for Autism as a toddler, but her bipolar symptoms seem to over shadow her autistic traits.  Once she started medications to treat Bipolar, her autistic traits became more apparent.  This eventually led to her receiving an official diagnosis for Autism.

My daughter’s autism diagnosis changed after the DSM-V came out in 2013.  She originally was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).  After a re-evaluation, her diagnosis became Autism Level 2 with accompanying language impairment.  The changes in the DSM-V allowed my daughter to get a much more precise diagnosis allowing her care team to develop a more appropriate care plan. 

My daughter is now 17 years old.  She has attended two Autistics Present Symposiums, and now a traumatic brain injury (TBI) symposium.  My daughter does not have a traumatic brain injury, but she discovered that she felt more at home with the people who attended the TBI symposium than she did at the Autistics Present Symposiums.

When I asked her why, she had a very eye opening answer.  What she discovered at the TBI symposium is the people there carried a lot of anger with them.  They are angry about their situation, they are angry about how other people treat them, and some of the people also spoke about their fear of their condition, their temper, and their struggle to adjust and conform to societal expectations.  The TBI symposium also addressed ableism My daughter told me that she encounters ableism every day.  She doesn’t say anything, because she is using so much energy not to get angry.  She is so worried about losing control.  She is at war with herself all the time trying to keep her from being pulled apart by everything she is experiencing internally and externally.  She has nothing left to self-advocate about the ableism she is encountering. 

My daughter told me that she feels people treat autistic people in a softer, gentler way.  People are more accepting of an autistic person than a person who has bipolar.  There is so much negatively surrounding bipolar. She hears people with bipolar are awful, unkind, and cruel people that hurt other people.  My daughter hears it in the media, in school, and out in the community.  Compounding the problem were the voices she would hear in her head telling her she was bad and even instructing her on how to hurt herself with knives and fire.  Luckily, she has not heard those voices in two years, but she still hears the negativity by real people. 

She feels safer saying she is autistic than telling anyone that she also has bipolar.  It takes a special kind of environment where she feels safe enough to disclose about her bipolar.  She felt more at home with people who have experienced traumatic brain injury, because she understood what they were talking about.  She understood their anger and frustration.  She understood the ableism they face and the impatience of people who do not understand the situation.  I am not saying autistic people don’t face ableism.  They do, a lot.  I think what my daughter was trying to explain was that autistic people might be treated with more understanding, but for a person who has a serious lifelong mental illness, that same understanding is not there.

My daughter’s autism and her bipolar are tightly wound together.  Each impacts the other.  How she experiences the world is a result of how her bipolar and Autism interact.  Society as a whole is telling her that part of her is tolerable and part of her is bad.     

I asked my son, who is 15 years old, what he sees when it comes to the difference between how autistic people are treated versus how people with mental illness are treated.  He told me that he thinks autistic people are treated with more contempt and he gave the examples of ABA, “cure”-based thinking, eugenics versus super human perceptions/intelligence like the new Sherlock Holmes. He then said people with mental illness are treated with more fear.  He feels people fear those who have mental illness. 

According to NAMI:

  • Approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year.
  • Approximately 1 in 25 adults in the U.S.—9.8 million, or 4.0%—experiences a serious mental illness in a given year that substantially interferes with or limits one or more major life activities.
  • Approximately 1 in 5 youth aged 13–18 (21.4%) experiences a severe mental disorder at some point during their life. For children aged 8–15, the estimate is 13%.
  • 1% of adults in the U.S. live with schizophrenia.
  • 6% of adults in the U.S. live with bipolar disorder.
  • 9% of adults in the U.S.—16 million—had at least one major depressive episode in the past year.6
  • 1% of adults in the U.S. experienced an anxiety disorder such as posttraumatic stress disorder, obsessive-compulsive disorder and specific phobias.
  • Among the 20.2 million adults in the U.S. who experienced a substance use disorder, 50.5%—10.2 million adults—had a co-occurring mental illness.

“NAMI condemns all acts of stigma and discrimination directed against people living with mental illness, whether by intent, ignorance, or insensitivity. Epithets, nicknames, jokes, advertisements, and slurs that refer to individuals with mental illness in a stigmatizing way are cruel. NAMI considers acts of stigma to be discrimination. Stigma reflects prejudice, dehumanizes people with mental illness, trivializes their legitimate concerns, and is a significant barrier to effective delivery of mental health services. Because of stigma, individuals and families are often afraid to seek help; health care providers are often poorly-trained to refer people to mental health professionals and/or mental health practitioners, and services are too often inadequately funded.” (Stigma And Discrimination)

Ableism is considered the intentional or unintentional discrimination or oppression of individuals with disabilities.  Ableism falls right in with racism, sexism, ageism, and classism.  People can be ableist without even realizing it. Ableism can exist in many forms.  Here are some examples:

6 Forms of Ableism We Need to Retire Immediately

Ableism/Language

What is Ableism and how is it harmful?

If you have a child who has been labeled a behavior student in school, ask yourself, “Is ableism in the classroom a possible trigger for your child’s behavior?”

If you are experiencing anger in the work place, ask yourself, “Are you experiencing ableism where you work?”

My daughter wanted to add a quote to the end of the blog:

“Spread the facts about mental illness, not the bias!”

The Invisible Torturer

Anxiety ImageAnxiety, why do you torture me so?

The shaking,

The heavy breathing of panic, 

The buzzing in my brain that exercise doesn’t subdue,

The pounding stims that have started up,

The flicking fingers that will not still,

Anxiety, just stop!!

 

What is behind all this anguish?

I want to escape, but escape from what?

My senses are heightened for why I do not know.

My feet and legs want to run, and run, and run.  

But where?   

There is no destination that will take me away this.

The torturer is inside me.

 

Anxiety, let me go!

I want to be free, but you are too strong.

Your invisible claws have enclosed around me.

No one sees my torment, for you have taught me to hide.

I must hide this agony, because no one believes me.

I am told I am being silly, that it is nothing, that there really isn’t a problem.

So, I suffer in silence and go about my day.

 

For me, Anxiety and Depression tend to go hand in hand.

I continue to fight against Anxiety and it wears me down.

Depression moves in due to my weakened state.

I am being attacked on all sides.

Yet, no one sees this battle, for the battle is inside me.

I cry, I yell, I run, I write, I make art.

I do this to fight the never ending onslaught of Anxiety.

 

I am weary in this battle.

There are days Anxiety gets the upper hand.

More days than I would like to admit, but I persevere.

Battles may be lost, but I carry on to fight another day.

Because loosing this war is not an option.

I will not allow Anxiety to be victorious.

So I take deep breaths, I center myself, and I continue on.

 

(Image is of a drawing of woman in a dress sitting down while covering her face. Artist is  Clara Lieu.) 

 

I Hate Complex-PTSD

(Trigger Warning – Discussion about Trauma)

I hate Complex-PTSD. There is no way around it, I hate it.  I got triggered today.  All it took was for me to be sent spiraling was for me to notice that a relative of mine had changed their profile picture on Facebook.  It was a completely innocent thing for them to do.  There was nothing wrong with the picture that my relative chose, but for me, it was enough to trigger a cascading effect of interacting layers of trauma that I have accumulated over the years.

Complex Post Traumatic Stress Disorder (C-PTSD) is a condition that results from chronic or long-term exposure to emotional trauma over which a victim has little or no control and from which there is little or no hope of escape.”

C-PSTD can occur in such cases of:

  • domestic emotional, physical or sexual abuse
  • childhood emotional, physical or sexual abuse
  • entrapment or kidnapping.
  • slavery or enforced labor.
  • long term imprisonment and torture
  • repeated violations of personal boundaries.
  • long-term objectification.
  • exposure to gaslighting & false accusations
  • long-term exposure to inconsistent, push-pull, splitting or alternating raging & hoovering behaviors.
  • long-term taking care of mentally ill or chronically sick family members.
  • long term exposure to crisis conditions.

How did I get to this point? I grew up in an emotionally neglectful and abusive household.  I married what I knew and the covert emotional manipulation and emotional abuse only got worse.  I have also been taking care of mentally ill family members for over 16 years now.  Then there is the medical trauma I endured 15 years ago that resulted in my initial diagnosis of PTSD which eventually grew to C-PTSD when more and more layers of trauma were exposed.

Post-Traumatic Stress Disorder (PTSD) and C-PTSD are similar, but they do differ in causes and symptoms. C-PTSD results more from chronic repetitive stress from which there is little to no chance of escape. PTSD can result from single events or short term exposure to extreme stress or trauma.

***Remember, C-PTSD is a stress disorder, not a weakness or defect of character nor is it a personality disorder although it is often misdiagnosed as Borderline Personality Disorder.

From The Center for Treatment of Anxiety and Mood Disorders:

CPTSD Symptoms

People who have gone through a long-standing, extremely traumatic situation may exhibit both physical and emotional symptoms related to their ordeal.

Emotional symptoms may include:

  • Rage displayed through violence, destruction of property, or theft
  • Depression, denial, fear of abandonment, thoughts of suicide, anger issues
  • Low self-esteem, panic attacks, self-loathing
  • Perfectionism, blaming others instead of dealing with a situation, selective memory
  • Loss of faith in humanity, distrust, isolation, inability to form close personal relationships
  • Shame, guilt, focusing on wanting revenge
  • Flashbacks, memory repression, dissociation

Victims of C-PTSD may also have physical symptoms, such as:

  • Eating disorders, substance abuse, alcoholism, promiscuity
  • Chronic pain
  • Cardiovascular problems
  • Gastrointestinal problems.
  • Migraines

From Out of the Storm:

Symptoms Shared by CPTSD and PTSD

According to Cloitre et al (2016), CPTSD shares three main symptoms with PTSD which include:

  • Re-experiencing the past – in the form of nightmares and flashbacks.  While in PTSD flashbacks tend to be visual, in CPTSD they are often emotional.  That is,  a sudden, overwhelming rush of emotions such as anger, shame, humiliation, abandonment, and of being small and powerless much like a child would feel when abused.  These are referred to as Emotional Flashbacks (EFs). and can last for minutes, hours or even days (Walker, 2013) . 
  • Sense of threat – constantly on guard or hypervigilant, strong startle reaction
  • Avoidance – of thoughts, feelings, people, places, activities relating to the trauma (e.g., dissociation, derealization)

Symptoms of CPTSD Only

Cloitre et al (2014) suggest that CPTSD differs from PTSD in that it has three additional symptoms:

  • Emotion regulation – Emotional sensitivity; reduced ability to respond to situations in an emotionally appropriate and flexible manner  
  • Negative self-concept – Feeling of worthlessness and defectiveness. Walker suggests that those with CPTSD suffer from toxic shame and have a virulent Inner and Outer Critic.
  • Interpersonal problems – Difficulty feeling close to another person; feeling disconnected, distant or cut off from other people (depersonalization, social anxiety). 

Everyone is unique and the above list of symptoms is not complete and not everyone with C-PTSD will exhibit all the symptoms listed. I, for one, do not have the physical symptoms of “Eating disorders, substance abuse, alcoholism, promiscuity”. There was a time I wanted revenge, but I couldn’t stand that feeling and fought hard against it. Revenge never solves anything and can ultimately destroy the person seeking revenge. I have wanted to die, but I have never had suicidal thoughts.  I also have never been violent, destroyed property, nor committed theft. I do not have cardiovascular problems, but I do experience chest pain during anxiety and panic attacks. I have had to establish healthy boundaries and am no longer in contact with certain family members beyond an occasional email.  I also never lost my ability to form close personal relationships with others.

What makes experiencing all this worse for me is that things that trigger me are typically seen as happy moments by most people, so there is little to no understanding as to why I cut myself off from exposure to reminders and why an unexpected exposure to a photograph of my happy sister, her happy husband, and her new baby affected me so badly.  I didn’t experience anger seeing that photo.  I was terrified!  Pregnancy and children birth reminders are horrible, panic inducing triggers for me. The reason for this is my medical trauma resulted from me being pregnant and giving birth.  I am not going to go into detail, but more information can be found here and here.

I got triggered this morning by a reminder of that horrific time in my life that was my medical trauma, the lack of emotional support I experienced from my family and continue to experience, and all the loss I experienced and continue to experience.  That one trigger not only triggered me regarding my medical trauma, but every  emotional trauma after it. There is a lot.  As I stated before, I was in an emotionally abusive marriage and came from an emotionally manipulative and neglectful home life that followed me into adulthood.    

It is 11:31PM now. I am still struggling. I have been crying off and on all day, but most of my crying was this morning.  How have I coped?  I used music and running.  I let myself ride the melody and lyrics of specifically chosen songs and played them over and over again.  I let the music flow through me and let the emotion flow with it.  I had to.  No more pretending.  I am safe now.  I don’t have to hide my anguish anymore. I have to let my pain out, but I have to do it in a health way.  I have been a runner for 24 years.  Running helps me regulate my anxiety and helps me control my meltdowns.  Running is not for everyone, but it is a way for me to help ground myself when the whole world feels like it is collapsing all around me like it did today.

My theme song today was “Total Eclipse of the Heart” by Bonnie Tyler.  I felt this song fit with how I was feeling and how I wanted to express myself, because I had no words, just tears and pain.  (Lyrics) 

After my run tonight I found myself still feeling lost. The song I needed to listen to was “Send me an Angel” by Real Life.  (Lyrics)

I have been waking up lately with this song playing in my head. I wouldn’t mind at all having an angel sent to me right now with some guidance and emotional support. Days like this are so hard, but they do eventually get better.  I just have to keep moving forward.  A better day will come.  

 

 

Closing Doors . . .

What do you think of when you hear the word “commitment”? What about the phrase ‘being committed to something or someone”?  What comes to mind then? I have found that the images are different depending on the individual.  Please realize that deeply caring about someone is not the same as being committed to them.  I was reminded of this when a certain person in my life decided to tell me he was committed to me; it was just a different kind of commitment according to him. Then later on he proceeded to tell me that he deeply cares about me and wants to be in a relationship, but he is not committed to me.  Confused yet?

I have been dealing with this same person for nearly 20 years. This is the type of confusion that he continuously created when ever commitment came into question.  At first he says the right words and acts like he really means what he says, but after he gets what he wants, his effort is finished and the sabotaging begins.  This is what someone who has commitment phobia does.  They want a relationship, but they also want space and freedom.  They can be loving, attentive, and very charming, but at the same time passive aggressive and emotionally neglectful.  Their sabotaging begins subtly, but then gets worse and worse over time.  They are not proud of their behavior and actually feel guilty, but it doesn’t stop them.  They are governed by fear, lots of fear. 

A phobia is an extreme or irrational fear of or aversion to something. Commitment phobia is a very difficult thing to deal with, especially when you are the one on the receiving end of the behavior.  In my case, for 15 years this person tried to hide their phobia and denied their depression and problematic personality features.  The problem with this is that it all will eventually bite you in the ass in a very big way.

Our family was torn apart by the action of this person. It has been four and a half years since the big bite happened and he subsequently left us.  He came back after three years after a psychological evaluation and had started counseling.  He stopped his counseling shortly after returning home and for the past year and a half we have been slowing rebuilding our family unit, but unresolved issues arose.

I haven’t really written in the past month, because certain revelations have been happening and I needed time to process it all. Slowly I have been trying to chip away at all the layers in an attempt to deal with these unresolved issues.  Talking ensued, lots of talking. What was finally revealed lead me to one conclusion – he has commitment phobia. 

How does one even develop something like that? To answer that question, you would have to divulge into why any phobia developments and the reasons really depend on the person.  In this particular case, I can honestly say that this person had a lot of baggage prior to meeting me.  Our various problems that we faced as a married couple just added to the mix of things he really didn’t want to deal with.

This whole idea of commitment phobia is something that I am having trouble wrapping my head around. I am a very committed person, always have been.  I am also a very loyal person, almost to a fault, which has led to me being taken advantage of.  I don’t know if these aspects of me are derived from being autistic or if they are simply aspects of who I am regardless of anything else.

In The Discovery of “Aspie” Criteria by Attwood and Gray, under “A qualitative advantage in social interaction, as manifested by a majority of the following”, number one states “peer relationships characterized by absolute loyalty and impeccable dependability”. Yup, that is me.

I am a loyal, dependable, and committed person. I am known as someone who doesn’t give up and am always looking for solutions and new paths to follow when I encounter a road block of some sort.  I am also someone who establishes strong bonds with people and have been known to be overly trusting way too many times.  Keep in mind that not every autistic person is overly trusting, but I am one of them that is.  I am also naïve even after being on this planet for 41 years.  Perhaps this is due to me being developmentally delayed, but I can’t say for certain.

Rules are rules to me and that includes rules in a relationship. You don’t cheat, you don’t play mind games, you are honest and open, and you are there for each other. This allows for trust to build.  Trust must be earned.  It took me so long to learn that.  I give way to many chances when it comes to people.  I don’t know why I do this, but after being hurt so many times I finally took it upon myself to learn about the importance of personal boundaries.

I was never taught about boundaries growing up. I also was never taught how to say “no”.  I was taught to comply.  Perhaps that plays into why I give too many chances, but I can’t say for sure.

I have been told in the past that I am too kind, that my heart is too big, and that I must have a lot of patience. I have been told that these aspects of me allows people to take advantage of me, to take advantage of my heart, which only leads to the heartache that I have experienced many times.

I married a guy who is basically a douche, but tried to hide that fact, because he really did and still does love me. The thing is, apparently love is not enough to keep someone from being unfaithful, being neglectful, and emotionally abusive. This is why all these years I have been so confused and so hurt.  Why would you tell someone you love them over and over again, tell them you want to marry them, make future plans with them, have children with them, spend nearly 20 years with them, and then systematically destroy it all?  It boggles my mind.

For four and a half years I have been hanging on unable to move beyond the shattered remains of my life I once had. For a moment I thought I was getting it back.  Everything felt so right.  We were a family again, but it was short lived.  The man I bonded to can’t commit.  All those hurtful things he did happened because he couldn’t commit and the lie he had been living finally caught up with him.  Instead of being honest with me, he used emotionally abuvise tactics to destroy our marriage so he didn’t have to be the one who initiated the divorce proceedings.  Something I had to do. 

Here we are again. He didn’t want to look like the bad guy, so he has been sabotaging repair efforts and I don’t know how much of his behavior he is even aware of.  Ingrained behavior is difficult for a person who is demonstrating the behavior to actually see that they are doing it. Denial is something he is very good at.

About three weeks ago I felt something emotionally close in my heart. At that time I learned that my ex-husband wants the benefits of the family he loves, but not the responsibility and commitment that comes with it. As these revelations were coming out, my ex-husband also started talking about not wanting to look like the bad guy by ending our relationship a second time.  Go ahead, if you haven’t already, start shaking your head at me and make disapproving expressions.  I know, I know. Déjà vu all over again except without the infidelity and abandonment parts. 

I have taken these last few weeks to process this feeling of something closing in my heart and trying to figure out what this sensation was about.  I have come to the conclusion that it was a door closing, so to speak.  This feeling was something new to me and I have had difficulties determining what it meant. 

For four and a half years I have been unable to move on. Too much hurt, too much anger, and too many unanswered questions.  I think that feeling of a door closing in my heart means I am ready to take those first steps onto a new path.  It still hurts, but the pain is different this time.  I have found that I have too much self-respect to continue on this roller coaster of a life that my ex-husband lives in. My children and I have had to lower our expectations to such a low point so we can be pleasantly surprised when he does a nice thing or he does what he said he was going to do.  It is ridiculous that we have to do this, but we have to take care of ourselves.  There was just too much disappointment and hurt that was happening.

My ex-husband was given a second chance to make things right. Instead of working with me to find middle ground and nurture our relationship and our family, he has chosen to dig himself in and not budge.  Working towards middle ground means commitment and that is something he is just unable to do.

I don’t regret giving my ex-husband a second chance. I had to find out.  I had to take the chance.  I needed questions answered and I needed to know if we could really be a family again.  I got my answers. The result was not what I expected or wanted, but I got what I needed.  I got what I needed in order to finally move on with my life.  As the Rolling Stones song goes:

You can’t always get what you want

But if you try sometimes well you might find

You get what you need

The Rolling Stones – You Can’t Always Get What You Want – Lyrics

In closing, I raise a glass of your preferred beverage to what the future may bring. May it be a bright future indeed.   Blessed Be.