The following is my story for the Digital Storytelling Series with the Mental Health and Developmental Disabilities National Training Center (https://www.mhddcenter.org). “The Mental Health and Developmental Disabilities (MHDD) National Training Center is a collaboration between the University Centers for Excellence in Developmental Disabilities at the University of Kentucky, University of Alaska Anchorage, and Utah State University”. Their objective is to improve the quality of services and supports for those living with a developmental disability. For more information about their organization visit: https://www.mhddcenter.org/about/.
In the podcast below, I discuss the multiple disabilities I live with and the challenges I have faced living with an “invisible disability”, both in employment and in accessing care. It is roughly 22 minutes, so listen at your leisure! My hope is that my story will resonate with you or someone you love who also struggles in a similar way.
My goal in sharing my story is to spread awareness and combat the stigma surrounding mental illness. Thank you for reading and feel free to share if you like.
A special thank you to Adam Potter, BA who interviewed me and edited my story and to the organization, MHDD, for the opportunity to share! I appreciate the work you do in increasing awareness and bringing a “voice” to our stories! Thank you!
With all the on-line bickering and arguing as of late, I’ve noticed a disturbing trend. It’s become so commonplace, that I see something nearly every day that truly rubs me the wrong way. It is the “scapegoating” of those living with a mental illness in social media. And it is not something that is only being done by “one side” or the other of the political divide, it is actually rampant on both sides.
Some examples I’ve recently seen are:
*Referring to those who are “racist” as “mentally ill”.
*Calling either political party “mentally ill” because their beliefs are in opposition to yours.
*Stating that someone is “mentally ill” because the are unwilling to take the vaccine to prevent Covid-19.
*Responding to an article about an individual who committed a violent act as “mentally ill”.
*Referring to those who are members of extremist groups as “mentally ill”.
This list goes on and on. Many of the above examples “scapegoat” those living with a mental illness by generalizing an entire group of diverse individuals by affixing the label, “mentally ill”, in a context that is dehumanizing and demeaning to those who truly suffer. As someone who has lived with a mental illness for nearly 32 years, this obviously is upsetting to me. And, it also increases the stigma surrounding mental health.
For those of us actually living with a mental illness, we realize that our diagnosis, disability, or condition does not define us. When you collectively refer to any group of people as “mentally ill”; You are devaluing this population by stereotyping and generalizing a group of nearly 44 million adults (roughly 18.5% of the US population) who come from all walks of life, socio-economic backgrounds, educational levels, etc.
As someone who lives and struggles with Bipolar 1, PTSD, OCD, and ADHD, I get tired of having “mental illness” being used as the catch-all and “go-to” phrase as the rational for everything wrong with humanity. When humans behave in harmful ways, a mental illness is NOT always to blame.
Hatred and the type of ideologies that lead to violence or discrimination, stems from learned behavior. Fear as well as a lack of education and exposure to others and novel ideas, can also lead individuals to act in irrational ways.
It is crucial to understand that living with an actual psychiatric disorder, causes the individual who is struggling to experience limitations and symptoms that are disruptive to his or her life. This could take form in a number of ways to include difficulty with employment, relationships, and even basic self care. Some struggle more than others and each individual’s experience is unique.
Many people who live with degrees of racism/homophobia/misogyny etc. actually do not experience any limitations in their day to day functioning and they are still able to function with little to no problems. So, acting in a violent way, espousing racist ideas, etc. may not mean you actually would fit into the criteria of having an established psychiatric diagnosis.
On the converse, many of those who live with a mental illness might struggle in a variety of ways, but are caring and empathetic individuals who have never been violent and are competent members of society who contribute both at work and in their respective communities. This includes people from all walks of life: pastors, nurses, teachers, etc. Often, because of the stigma attached to mental illness, individuals do not always disclose their struggle.
Thus, when I see so many people use the term “mentally ill” to describe a violent or racist individual, etc. it is harmful to me and others who are working to debunk the myths surrounding mental health and decrease stigma.
I actually spend a lot of time on-line educating others. Sometimes, I have been pleasantly surprised to receive an apology when I explain to an individual who has just equated racism with mental illness, that their words are every bit as damaging to the mental health community as certain expressions are to POC.
Those of us living with a psychiatric disorder are like anyone else. We want to be seen for who we are, not for our disability. And we want to be seen in a positive light.
I live with a mental illness. I also am educated and hold a MS degree. I have never harmed anyone, nor have I ever been violent or arrested. When you take the word “mentally ill” and equate it with something truly negative, it is harmful to people like myself.
I hope this helps people to understand that changing what words we use actually matters, even when it is something as trivial as a comment on a Facebook or Twitter post. Words are powerful. They matter. Please respect them and use them responsibly.
I hope one day I see a lot less scapegoating and stigmatization of the mentally ill. It does make me more hesitant to openly discuss my psychiatric disability for fear that people will assume “the worst” about me. And this causes some individuals to not seek treatment because they don’t want to be identified as someone with a psychiatric disorder.
I am just like YOU. I am just another person journeying along in life, trying my best to improve, grow, and learn. Next time someone scapegoats an entire population of people, please remember me. There are 44 million more of me in this country and we want to be seen for who we are, not diminished to a label in a demeaning and disrespectful way!
Thanks for reading. I just felt this was something I needed to express, not only for myself, but for the many others who also might feel dismayed and discouraged by being scapegoated. Let’s lift each other up and see the best in all of us!
That’s me above, and my pup, Gracie. This picture was taken nearly 5 years ago while I was still working. I was living in Seattle, WA at the time, and working in a long term facility as a recreation therapist (CTRS). And, trust me, even while donning a huge smile, I was severely anxious and struggling!
Since then, I’ve been approved for SSDI and have been focusing on rebuilding my health, one day at a time. My hope is to live gracefully with my illnesses of: Bipolar I, PTSD, ADHD, OCD, and PMDD. I have learned to accept my illness and am acquiring new skills and approaches to cope more effectively.
The suffering I’ve endure related to my mental illness has been amplified by the stigma and the shame surrounding it. It has taken me years to separate myself from the symptoms that my illness has caused and the stigma that is perpetuated by those who lack the awareness and sensitivity to understand my struggle. The shame I feel from having an illness has significantly decreased over time, as I have worked to cultivate acceptance and compassion for my struggle.
The “stigma and shame” surrounding the “suffering” can, at times, exacerbate the severity of my illness. It has taken years of healing to separate the “suffering” from the “stigma” and the “shame” that often accompanies mental illness. I share in the following paragraphs how the suffering, which is often biological for me, has been impacted by the stigma I’ve faced, which inadvertently causes shame. Being able to see these as independent from one another, has allowed me to move further along in my healing process.
What do I mean by my “suffering”?
My “suffering” is my life-long struggle with an illness that causes chemical changes in my brain that are often difficult for me to manage and control. I never chose to be mentally ill, not for a certain time period, or even for a day! In fact, my illness began when I was in the “prime” of my life! I was captain and MVP of the swim team, had a leading role in the school musical, and was well supported by my friends and church. Like many others who struggle, I was active and involved prior to the onset of my mental illness. My illness began around my sophomore year, and it crept along, gaining momentum, until one day it was painfully obvious to others that something was just “not right”. In my case, my struggle presented itself as a combination of symptoms that included: obsessive & intrusive thoughts, delusions, anxiety, panic attacks, depression, and disassociation. I was acutely aware that my thought processes were somewhat “off” and I decided, on my own, to seek treatment. It was unsettling to me at the time and caused me much distress.
I have often made the comparison that my “suffering” is much like having an onslaught of bad “side effects” to a prescribed medication, except that the symptoms are often more severe than that of side effects and the onset and duration of symptoms can be unpredictable and uncertain. For example, too much caffeine may cause some to experience symptoms comparable to mild mania in that they may be: edgy, anxious, irritable, energetic, even euphoric, etc. Their mind might even race and they may feel overly optimistic about what they can accomplish. Depression can feel somewhat like taking too much Benadryl for an allergy attack: one can feel foggy, exhausted, excessively sleepy, and withdrawn. In drawing these comparisons, I am trying to help a person who doesn’t suffer understand that the symptoms are not only biological, like side effects that must wear off, but they are also difficult to “snap out off”. Unfortunately, for the sufferer, it is not as easy as discontinuing a medication to stop the unwanted side effects.
Thus, my “suffering” is a lot like clipping along and doing “ok” and then being suddenly blindsided by a cycle of unwanted “side effects” in which there is no escape. Sounds like a personal hell, right? It is. This is the suffering that most people (unless they experience it) do not understand, while some others do not even acknowledge. Medication and other approaches (mediation, therapy, etc.) can sometimes alleviate or decrease symptoms, but many of us suffer for years, on and off, endlessly trying to “escape” a chemical imbalance that causes the illness.
Unfortunately, because mental illness is often misunderstood, I’ve had to “suffer” in world that stigmatizes and shames those struggling. There are many people that question the validity of mental illness and have unfair and unrealistic expectations of those struggling. I can remember being released from my first hospital stay and friends laughing at me or telling me I just need to “snap out of it”. I even had a counselor in college who told me, I needed to “pull my boots straps up, and try harder”. Obviously, this caused me immense shame as I blamed myself when I struggled to control my moods or manage my level of anxiety. This compounded my anxiety and depression as I felt ostracized from others and would resort to “self-loathing” when my illness became episodic and I couldn’t “snap out of it”. I often blamed myself and became more alienated. I was diagnosed before the internet was in existence and couldn’t reach out to “social media” or on-line groups for support.
Often people who have a mental illness feel that they must hide their struggle from the workplace, for fear of retaliation. I remember after being initially diagnosed in the early 90’s with Bipolar 1, I was told to “hide” my diagnosis from others, particularly in the workplace. This only served to ramp up my anxiety as I struggled to keep everything “sucked in” and hidden from view. I have even lost jobs and experienced discrimination in the workplace when requesting help in the form of accommodations. My struggle was often viewed as not credible and I was seen as a “troublemaker” or an “attention seeker”.
The stigma surrounding those struggling with a psychiatric disorder, often prevents people getting help in the workplace and seeking treatment. The effects of stigma can be devastating and can mean job losses and access to adequate care. Many of the failures stemming from those suffering are not the fault of the individual struggling, but of the inadequate and unjust system that perpetuates stigma and negative stereotypes.
The stigma can lead to a deep level of shame. Without others having the awareness and/or sensitivity of my illness, of which I felt I had to “hide”, there were times I was misunderstood. I might have been seen as haughty or short when I had to disappear quickly to manage an escalating panic attack. I may have been viewed as uninterested or unmotivated on a day when I was struggling with my depression. My symptoms were often misinterpreted as my personality, and this caused me conflicts with others. In time, I could see clearly that my illness had robbed me of my potential in the workplace, but NOT of my talent, motivation, experience, or passion. It was often how I decompensated during times of stress, due to my illness, that wrecked me. And my frantic efforts to to feign “normalcy” only exacerbated things, until I just “quit” abruptly, or began missing too much work.
These lived experiences of struggling, experiencing stigma, and then feeling shame, ultimately caused me to respect my illness, for what it truly is: a devastating biological illness that affects my mood and perceptions which is often visibly seen through my behaviors. I began to see the distinction between myself, when I am suffering, and myself when I am not. I started to challenge myself in the midst of my suffering to let go of the shame that I had relating to my behavior when sick. I could see that focusing on the negative behaviors that arise during an episode, often served to keep me hooked in a cycle of shame and regret. Instead, I decided to give the illness the respect it deserved and I spent time finding ways to aggressively fight it and keep it at bay.
If you are like me, if will more than likely rear its ugly head again, but this time when it does, I have decided to forgive myself, instead of lamenting the mistakes made when chained against my will, and suffering with a serious mental illness. Now, I get busy working to “get ahead” of the next episode. I’ve decided to be like a hunter and become skilled at tracking it down, intercepting it, hopefully before it escalates too much. And even, if I become ill, and things “get messy”, I quickly return to practicing self compassion and respecting the chronic mental illness that I live with that takes immense effort to manage effectively.
I’ve learned through a lot of years of tears and immense pain, that I don’t have to be ashamed anymore. I also acknowledge that many people are going to misunderstand my illness and there is only so much I can do to educate and inform others. My hope is through writing I can help others better understand what it has been like struggling now for nearly 32 years with a severe and persistent mental illness. And, I am immensely proud of the courage and persistence I espouse, despite the often insurmountable odds I’ve faced living in a world that is still sometimes not accepting or sensitive to my struggle. I hope this helps others. If it does, I am even more grateful for what I’ve lived through and survived.
As I was sharing my recent heartache and experiences with my therapist the other day, he stopped me to explain his role as a mandatory reporter. Therapists, as well as other medical providers, teachers, etc. are trained to recognize the abuse and or neglect of children or vulnerable individuals and report the occurrence to the authorities so that it can be investigated. Individuals trained in this manner are called “mandatory” reporters because, by law, they are required to report any alleged incidents of abuse or neglect of a vulnerable individual. Both my mother and I are “mandatory reporters” because we both have worked in the healthcare system and have received the training that now requires us to report. This isn’t the first time a therapist has stopped a session to explain that he or she may need to report the abuse or neglect that has occurred in my sister’s home. In fact, it has happened with nearly every therapist I have seen. I haven’t had any therapist tell me that they have followed through with a call, but it is likely they have.
This has got me to thinking about a few things. For one, I have made a few calls to both Child Protective Services (CPS) and to Adult Protective Services (APS) over the past few years. To my knowledge, my mother has never called CPS or APS to file a concern regarding the well being of her great-grandchild or her disabled, adult grandchildren. Although, we both have been trained to report incidents of abuse and neglect, I find it odd that my mother has never done so. Often, my mother and I disagree over the extent of the abuse and I feel she not only downplays it, but doesn’t want to acknowledge it or even discuss it. This has left the responsibility up to me to report and has often left me feeling like “I’m the bad guy” for “telling on the family”. The lack of adults who have knowledge of the abuse, but who have not reported it, have left the grand baby and disabled adults vulnerable to potential danger. Because of my willingness to confront the abuse head on and even report it a time or two, I’ve endured shame, scapegoating, gaslighting, and abandonment.
Meanwhile, continued episodes of abuse and neglect occur with no real consequences that could possibly change things for the better while providing protection to those who are vulnerable there. Instead, over time, I have had to grieve and let go, walking away with pangs of guilt for “abandoning” those I know to be struggling there. The system (CPS) simply doesn’t have “enough” information or resources to investigate and move forward on the claims I’ve made. And, my Mom and sister downplay the chaos and drama that continually enfolds there, calling me “overly dramatic” and/or “controlling”. I have left because after years of confronting and fighting for respect and visibility in my family, I have been dismissed as difficult, abusive, and disrespectful. Granted, I have become very ugly with my Mom for not “taking my side” when I’ve confronted the addiction that I feel has substantially ruined 5 lives already. I have brought up the SAME concerns to my mother that I have to therapists only to be ignored, discarded, or dismissed by her. This struggle has lead to feelings of despair and alienation, and ultimately has lead to me feeling I have to “walk away” for my own health and sanity. I do not feel my mom dismisses me knowingly and intentionally. Instead, I believe her responses to be a result of her own ineffective ways of dealing with trauma that were formed early in her life.
It was in this LAST therapy session that it truly dawned on me how ALONE I have been in this fight against the addiction that has caused so much hurt and annihilation in my family. I “took note” this time when my therapist noted the severity of the situation as I casually discussed the violence and drug abuse that continually erupts in and around my sister’s house. It wasn’t until a day or two later that the therapist’s response began to weigh heavily on my mind. The information that I had relayed to the therapist was the same information that my mother has received on multiple occasions, but had neglected to question it and report it so that it could be investigated. Often, my mother would decline following up or reporting, using the mantra that “no one really knows what’s going on” anyway. As long as she could claim some level of ignorance on things, she would do so.
And yet, as time moved forward there has been more episodes of violence, incidents of drug use, and crime. Not to mention no adults (there are 6 of them) who reside in my sister’s home work. Two are disabled as a result of their drug use and I question their ability to work. The other two, I assume actively use, as they both were supposed to be in rehab recently, but one left treatment, the other might still be on a waiting list. Both of them only decided to consider rehab after getting in trouble to avoid certain consequences. Again, evidence that consequences actually can cause an individual to receive help. I acknowledge that is just the first step. But, often our family has “failed” at getting people to the first step because they have enabled them and thus they do not experience the consequences that might provide them with an opportunity to seek treatment.
Over time, I’ve learned that it is not only addiction, but Narcissistic Personality Disorder, that has caused so much pain and devastation to me and my family. My sister, simply put, continues to cause damage while my mother enables her behavior. And thus, everyone outside of that codependent relationship is actually quite sick. Either they are using substances and are in the throes of “active addiction”, or they are permanently disabled due to severe and persistent mental illness. They have not been well enough to manage their lives and heal from the significant trauma of being raised by two people who struggled with chronic addiction issues. And the parents never really invested in their future by providing them with a basic education and the tools needed to be independent. Instead, my nieces and nephews essentially “raised themselves” in their adolescent years with little to no oversight. The neglect was extreme and they were not protected from chaos that was continually brought in by the constant traffic of individuals struggling with significant addiction issues. In fact, the family endured the death of a three year old that my sister often baby-sat that resulted from a caretaker beating her to death because she knocked that individual’s “fix” off the table. After the traumatic death of this child, I tried again to get my sister help for her addiction and urged my sister to surround herself AND her kids with healthier adults. My pleas fell on deaf ears, the drug use continued, and not more than two years later my sister’s kids experienced the traumatic near death of their mother due to needle use.
Even so, no one would stand with me and confront my sister’s drug use and she went back to using after healing enough to do so. I’m not sure if she used needles after the incident, but she definitely was using again on and off. Although I urged my mother many times to join me in confronting the addiction, my mom dug in deep and continued to dismiss my concerns. There were times she “agreed that there was a problem”, but it never seemed to her, severe enough to join my efforts in confronting it. I stood alone in the storm and over time this has completely eroded the relationship between my mother and me. To me, it has felt like a refusal to acknowledge the depth of the addiction and the neglect it caused. I predicted long ago when my sister began using very heavily that my bonds between my family and me would nearly be destroyed. More than a decade later, after years of screaming into dead space, I am walking away from the trauma that caged me. It has been traumatic for me to watch my nieces and nephews all struggle with addiction issues, many times leading to arrests, incarceration, abusive relationships, and near overdoses. The struggle with my sister was hard enough, but it has been multiplied times 5 over the past decade as I watched one by one my nieces and nephews surrender to the throes of addiction. I watched as no one walked across their high school stage to receive a diploma and each of them became more engaged in drugs and criminal activity. At one point, I even watched as my niece went back to her abusive husband who was reported to have assaulted my niece’s father and had even held her hostage at gunpoint. I continued to confront and fight for my niece for a whole year while hearing that her husband was “drugging” her and controlling communication. As an individual with a diagnosis of C-PTSD and a history of childhood trauma it took a lot of time for me to “let go”. It was made even harder because no one else in my family wanted to join me in the endeavor of confronting my sister’s kids and getting them help. I often felt I was the only one seeing and acknowledging the devastation. Things continued to be normalized and I became the “problem” of my family.
Over this past year, I acknowledged I was powerless in this fight. I was not only being stonewalled and character smeared by my sister, but my mother also continually dismissed my concerns and often either rationalized away things or defended my sister. Stuck in this spiral of never feeling heard, I surrendered to the reality that I was completely ineffective in “reaching” those in my family struggling with addiction. As a result, I have slowly and painfully given up “the fight”. It was destroying my health and I decided to “cut ties”, heal, and wait to reconnect in distant ways after I grieve the loss. So, in the midst of a global pandemic when many are reconnecting and becoming closer, I have “let go” and have become more isolated. It’s difficult, but it is what it is.
So, when my current therapist stopped me during our session to share his role in mandatory reporting, it struck me AGAIN that it wasn’t only me who found the behavior of my sister and her adult kids concerning for the child who is being raised in the home. In ways, my therapist’s response was validating to a certain extent.
I believe one of the most difficult things in dealing with a dysfunctional family, besides feeling alienated and often invisible, is the shame that society places on “airing dirty laundry”. We are told to hold the secrets inside because there is great shame and stigma associated with revealing the dysfunction in our families. This further compounds the issues of isolation and can lead an individual to go “over the edge”. And often, this leads to an individual feeling as if they cannot “relate” to others. I want to “break the silence” and the “mold” that is telling those who suffer, to do so silently. The silent epidemic of sheltering and hiding dysfunction is deadly, for some.
Ultimately, I would love to one day work with and write about the trauma and pain associated with the forced shroud of silence surrounding family abuse and neglect. We heal when bring things into the light, which can lead us from confusion to clarity. We heal when we can separate our story from the historical cycles of shame and guilt. Although it can be a brutally messy process, light and truth is required to separate ourselves from the ancient chatter that binds us to the darkness of our past. The darkness that people want to ignore, to burry, and to even deny, is what must be bravely examined in the light so that separation can occur. We must go on a journey of self discovery, and “shed” the skin we were sealed in as a result of cyclic shame and loss. It is in this space, where we are increasingly becoming aware of our loss of attachment to our past, that we begin to sense freedom from it. This is the space where separation results in accountability and ownership, and ultimately the empowerment to “take flight”. It is in this same space, where we are able to cultivate compassion for our past mistakes and willingly forgive ourselves and others. We begin to open our conscious to the collective suffering of humanity and, despite it all, we become curious about our infinite potential to create and sustain our own peace and stillness. Standing in the light, recognizing the shadows that have been laid to rest on the ground beside us, allows us to fix our vision and gaze on the vast horizon ahead. I’d like to think this space is where the “magic” happens and the “mystery” of life is renewed. We once again view the world with childlike excitement, but with the strength and resolve of an adult. It’s a rebirth where separation occurs, boundaries are drawn, and mastery is refined.
The curtain where the “wizard” was pulling the strings has been drawn. Light is flooding in and, in the beginning, this causes disappointment, disbelief, anger, and even pain. But, what comes to pass is that we realize, much like Dorothy did in The Wizard of Oz, that “home” was within our grasp all along. We can take ourselves where we like. The light that floods in reveals we’ve always had a “heart, a brain, and courage”.
With the curtain pulled back on my life, I can easily see what is mine and what is theirs. There is now full transparency and although, initially painful, I realize that it is up to me to go forward, separating myself from the shame and suffering that caged me.
I feel a sense of stability in this newly formed space that I have begun to cultivate all on my own. And I’m proud that I am no longer part of the “status quo”. I’m moving forward, even if a bit isolated and alone. I trust that I will bring people, love, and light into my life while protecting myself from needless noise and chaos. Land, undefined, is finally gaining definition and taking form. Finding myself in this space is freeing, while, at the same time I feel more anchored and resolved. This is my life. It is messy and imperfect, but it is also full of forgiveness and love. And this is just the beginning. I’m shedding the cocoon to flutter, fully in the light, with less cares and worry. Life is lighter. And the space around me is finally mine. ❤️ 🦋❤️
I am massaging the stillness that is ever present within my struggle. I am increasingly aware of its existence budding within me, no matter how much I distance myself from it when in pain or I dismiss its potential to heal me. The human mind, which is hard-wired for survival, is conditioned to attend to the habitual sound bites that often keep us contained in rituals of distraction and preoccupation. We continually get pulled into these weathered and worn spaces because familiarity feels safe. However, sometimes the hyper-vigilance and patterns that helped us survive in the past are the very patterns now responsible for denying us our freedom. Turning towards myself and sitting in the stillness, I am able to carefully untangle the knotted up yarn of my life that had once been seen as unmanageable.
Creating the space for the stillness to expand and evolve will more than likely be one of the greatest challenges of my life. And yet, I know that the gifts of doing so are beyond my current comprehension. Humility, self-love, forgiveness, compassion, peace, and joy are a few of the gifts that not only come from the release of attachment, but also offer emancipation from the self-imposed shackles that have limited my sense of freedom and my capacity to love. The realization that much of our suffering is “self-imposed” is what ultimately puts us in the driver’s seat and behind the steering wheel. The world will always offer displays of depravity and suffering, and yet, acceptance of that reality frees us from struggling against it. When you feel as if you are drowning, the best course of action is to acknowledge it, and surrender to the reality of “what is” by floating on top of the water saving your energy to tackle the next storm. Some waters are choppy and fierce. Your ability to submit to that reality by floating will be what empowers you in the end.
And, oh, how I have been struggling as of late, embracing the sorrows of the world! I’ve been fighting the waves, expending all my energy , swimming against the undertow. I cannot count the amount of times I’ve been washed up along the shore completely disoriented, humiliated, and in despair. And many times, I have been alone in the madness, often fighting with myself. I was doing anything and everything but floating!
The past few years of my life I fought tirelessly against several waves of loss that left me feeling broken and in despair. I had a life-long, good friend take her life, an entire family lost to addiction, and a loss of independence and employment due to struggling with a mental illness. Because I am stuck currently on Medicaid, I have struggled to get adequate medical care under a system that is incompetent and is ill-equipped to deal with the demands placed on it. On a larger scale, I am watching my divided country “duke it out” on social media while homeless people sleep on the cold, concrete streets of Los Angeles. It seems that the world is crumbling before me as people turn away from each other with professions of progressivism and purity. Humanity has its depravity, despite its immense capacity to heal itself. The reality that many turn away from one another instead of bending towards each other in times of crisis, intensifies the despair I feel on a daily basis.
Some people would suggest gratitude, distraction, or any other endeavor to cope with feelings of hopelessness. I am trying acceptance and acknowledgement. I do, however, feel grateful for what this struggle is teaching me. Here, in the midst of chaos, I will share how my struggle has blessed me, in certain ways. I wish life had dealt me a different hand, but I know things could have been much worse. Life is difficult by nature. I will put my faith in floating. I am 47 and despite everything lost, it is time to “settle in” to this lifetime. It is passing and time waits for no one.
What my struggle has gifted to me:
My mental illness of: Bipolar 1, PTSD, ADHD, Hyperawareness OCD has gifted me insight, sensitivity, persistence, and tenacity. Living with this struggle, and with the stigma of it, I have often been misunderstood. I have had to work harder to refine my ability to communicate to others my reality and struggle. I also have had to deal and cope with a fair amount of invalidation and discrimination, as well as dismissiveness from others, including places of employment. The pain from this was immeasurable, but it has left me with a desire to inform and educate.
My experience of receiving SSDI and relying on social programs, like Medicaid, has been an eye opening and gut wrenching experience that has renewed my commitment and passion to serve those in need. I have felt powerless and vulnerable trying to get my healthcare needs met in a system that is utterly broken and incompetent. My heart breaks for those who are unable to advocate for themselves or who lack the stamina or health to get their needs met. The system is BRUTAL. I know in time I will be able to speak from a place of truth and experience when addressing these issues. No matter how hard this struggle has been for me, I have been granted the gift of lived experience. I don’t want this gift to go to waste and I hope to help others in time.
The loss of family due to addiction, has made me more aware of the illness and the variables that often perpetuate it. I’ve learned a lot about self-forgiveness, compassion, and patience. I have gained more knowledge about the limitations of our current healthcare system in addressing the epidemic of addiction and what approaches might be more successful if implemented. I have also learned to surrender to what I am unable to personally control or change. It has been a long and difficult road, but I am slowly letting go of the notion that I might be able to make a difference. It has been my experience year after year with my family, that little has changed. Surrendering to “what is” and recognizing the limitation of my influence is a gift that hopefully will free me and one day help others.
The loss of employment, due to my illness. has taught me the valuable lesson that I am not defined by my vocation. Learning to find value and identity in other endeavors outside of employment has allowed me to recreate my life in ways where all parts of myself are honored. It has made me realize how much our society ties our worth to our careers and how most of our time is absorbed by our experiences in employment. This space in my life where I have been disabled has again afforded me with the lived experience of directly interacting with governmental programs. Often, the experience has been devaluing and difficult. Still yet, I am grateful to have experienced what many of our citizens face, a harsh and inefficient system that is anything but personal and caring. This experience has made me motivated to be vocal in hopes that change will one day be on the horizon.
Collectively, all of my experiences of loss have made me a stronger individual.I would like to think they have been preparing me for something larger in the end. We will see. In any case, the last decade it rained relentlessly without much of a break. My life seemed to fold in on me and I feared it would nearly collapse. I was suicidal for nearly three years. I hung on even when I believed there was no point to do so. And although, the rain still comes, I have realized that I am still here. Blood is still pumping through my veins and I am still able to do so many of the things I value. Despite, the many stories of heartbreak that I could share, I am still here, standing. I have a lot to write because many of my stories are actually very similar to the heartbreak of others. Many of us have lived with the beast of addiction either personally or in our families, many have suffered with a mental illness or a disability, many have been devastated by a job loss, many have experienced abuse in their relationship with a partner, many have lived through poverty….. And, many of us have felt utterly alone in our experiences. We are not alone. My experiences of loss have gifted me with the strength and passion to share with others. Let us be the light for one another.
There was a time in my life when depression had swallowed me whole. I remember a time not too long ago when I was in an abusive relationship where my partner continually communicated to me that I wasn’t “good enough” to commit to “yet”. He wasn’t sure if I was “worth it”, he stated. I stayed on trying to prove my worth to him because I did not believe yet in my own worth. I was seeking his approval. Leaving him was one of the first steps I took towards myself. I wrote the poem below titled “The Desolate Sea” during the days when I was fighting to be “seen” by him .
Oddly enough, the losses I experienced forced me to turn inward and evaluate myself. In doing so, I began cultivating self-compassion for my flaws and celebrating the essence of myself: the things that made me “beam” with joy. Over the last year or so, I sought solace in nature, often marveling at the beautiful mess of the forest, its lush ferns and mossy limbs covering every inch before me in a frenzied and chaotic fashion. There were broken and decaying limbs on the forest floor where large evergreen trees towered over, hosting a few birds in their lovely branches. It was all of this new life coexisting with the old and decaying that helped me embrace my own beautiful mess. There was no organization to the forest and it was still absolutely inspiring. It made me feel okay to have all of those parts, the old and new, coexisting inside of me and yet still feel purposeful and whole.
The following poem, “The Desolate Sea”, stems from one of the “parts” of me where I felt unloved and even, broken. I am including it in this post because I do feel we all have parts of ourselves that, at times, can be self-loathing or even full of insecurity. I’ve grown a lot from that time in my life. The losses in my life have helped me to see the essence of myself from being stripped of so much. Life can be lonely and there may be periods where we isolate from others and feel that no one can relate to our struggle. Life is difficult for everyone by its very nature. My poem, written in the days when I was desperately seeking the validation from my ex, demonstrates that life eventually moves forward. Tough times often result in growth! It also reveals that what I accepted in the past, is not what I would ever accept today, or in the future. The struggle of life is real, while the embracing of the self can be a continual gift. I hope you enjoy the poem. Wishing you light along your path!
Can we please stop using the word, “Recovery” when talking about mental illness? The use of this word for those who struggle their entire life with a mental illness is damaging. This one small, seemingly insignificant word communicates to others that healing from a mental illness is possible if you only “try hard enough”. “Recovery” assumes that the one suffering has the possibility to completely “regain control” of their life if they only take accountability for their illness. It’s a very slippery and stigmatizing slope to place the burden of one’s illness on the individual who suffers to absolutely no fault of their own. While I can agree that the healing process requires an individual to come to terms with their illness and manage it, I do not agree with the sentiment that others who are struggling just haven’t “tried hard enough” to reach recovery. Some of those who struggle alongside of us will not recover, ever. Some will die due to this disease. And there are some, who actually will heal enough to remain in remission. We cannot assume that everyone that suffers is able to reach stability and insisting that they can do so only serves to shame them.
The definition of the word recovery implies that one is virtually cured:
Recovery:“a return to a normal state of health, mind, or strength”. OR
“The action or process of regaining possession or control of something stolen or lost”.
I understand why people are drawn to this word and use it instead of “coping or managing”. Healing is an individual process and it is something that cultivates pride and mastery. It takes immense time and work to heal oneself. I am engaged in the process as we speak and it has been extremely challenging and difficult, but rewarding. Even on my best days, I do not feel I have recovered: “returning to a normal state of health, mind, or strength”. I have struggled for nearly 30 years and I honestly do not feel I will ever be completely recovered. Some are in the throws of persistent and severe mental illness, with psychotic episodes that are uncontrollable. Although, I do not experience psychosis, I know how it feels to be dropped back down to earth, disoriented and bewildered from an episode of mania that kidnapped me once again. Was I too blame? Did I just not try hard enough?
What I can tell you is that Bipolar illness crept in slowly and stealthily in my late teen years, stealing my laughter, my potential, and my clarity. I was actually on top my game physically, an athlete. I was sociable and friendly, a lead in the school musical. I had been accepted into college and was not involved in drugs or even in a sexual relationship. I was NORMAL and my illness ROBBED me of my care free and happy lifestyle. When you preach “recovery” and the role I must have in it to stay healthy and stable, it communicates on some level that I caused the instability. I was simply living my life and it was hijacked and destroyed by an illness that I did not ask for, nor did I want. I prayed for “recovery’ and complete remission. And in the past 30 years of my struggle there were years where I was more stable and years where the beast of mental illness rose again, rendering me disabled and destitute. The imbalance in my brain is not always controlled by me. Therefore, I choose to embrace the illness and struggle “as is” and “manage and cope” as best as possible.
Here is me the year right before I became very sick on the Summer swim team:
I feel recovery in the incidence of mental illness is shaming and stigmatizing. Those who have a choice to remain away from what is causing their illness, such as in substance abuse, perhaps can talk about being in recovery. Their actions and their commitment to their health, has restored it. With mental illness however, a person can be choosing the right behaviors and still experience a damaging episode. And sadly the first thing people will say is: “Were you taking your meds, Were you sleeping, Were you…?” And, guess what? They might not have, but often times they did not choose to alter their behavior. Many times behavior changes as a result of perceptions and memory being altered as a result of the illness and then it spirals from there. I cannot count the amount of times I “skip” a dose of my Lithium because I simply cannot recall if I took it, even if I am marking it down or have a pill box. The first signs of my illness, I have learned over time, is disorganization and memory problems. People have told me I look and sound different when I am manic. So much is altered that telling me I should have done this or that is kinda fruitless when you truly understand what is occurring. And I often don’t know that I am going into an episode until I “fall out of it”, regaining clarity once again. But, somehow when my brain goes awry, I am supposed to stick to certain coping mechanisms and ultimately there is a lot of self-loathing that occurs because I cannot do so. My MS degree means nothing when I can’t even accomplish basic functions because of my mania or depression. And this has been an on-going struggle for years.
And so, I had a choice to make: to accept my faulty-wired brain or beat myself up and “try harder”. I am choosing to embrace myself as I am and do my best to manage and cope. And so, to all of you who feel you may never “make it” and “recover”, it’s OK. My advice is to do your best and if you have a day or week or even a month where you completely fall apart, accept it. Surround yourself around those who accept you the way you are. This moment right now is what truly matters and you may or may not make it across some made up finish line to “recovery’. No matter where you are at in the process, embrace it and love yourself fiercely and completely, regardless.
I am coping and managing my illness as best as possible. There is NO finish line. There is just myself and my experiences and what I know. And I know my struggle and how hard it is. Embrace you, because you are “that special”, “that amazing”, and “that worthy”.
As an individual who has suffered for over two decades with Bipolar 1, I share with you the same outrage and heartache you more than likely experience when learning about another incidence of gun violence in our country. I cannot imagine the deep despair and sadness that comes with losing a loved one in such a senseless tragedy. Gun violence strips away our sense of security and is another issue that divides our country.
As we struggle to understand the root causes of gun violence, many Americans are pointing fingers at people like “me”, the mentally ill. Given that most of the mentally ill are not violent and are more likely to be victims of crime, I grow weary of the stigma that grows with each passing incident. It looks like, to me, the mentally ill have become “the scapegoat” of the gun violence debate. It’s convenient to state that the mentally ill are the problem, after all, the stigma alone perpetuates fear and misunderstanding and encourages the public to doubt the credibility and stability of the mentally ill. The mentally ill are a largely misunderstood population and often those who suffer do so silently.
Ironically, the same individuals scapegoating the mentally ill as “dangerous and violent”, are the same who wish to cut funding to programs like SSDI (disability insurance), vocational rehabilitation and other programs that benefit the mentally ill. Discrimination in the workplace is common for those who struggle and as a result employment is often difficult to maintain. The government over the years has done little to decrease discriminatory practices in the workplace and the Equal Employment Opportunity Commission (EEOC) is often very slow to act, its power is limited. If the public is fearful that the “mentally ill” are violent, the government actually does very little to intervene and instead often places individuals who are struggling in very desperate situations. The point being that the mentally ill are literally pushed to their breaking point with a government that is so slow to act when providing assistance. This puts the survival of many who struggle in constant jeopardy. This is evidence again that the mentally ill do not resort to violence despite the lack of assistance and treatment available and that many are victims of violence and discrimination. There is absolutely no safety net for the persistent and severe mentally ill in our country. And yet, even with the constant struggle of living with a mental illness, most hold themselves or are held by others through difficult and trying times.
On a personal note, last year I lost my job as a Social Worker with the State of WA, DSHS. I was fired after a medical leave at the first meeting established to put accommodations in place. I was told at this meeting that I was disqualified due to my disability of Bipolar 1 and was granted no accommodations. As a result of losing my job (and other jobs related to my illness), I relapsed and have not been able to work this past year. I attempted to get on to Vocational Rehabilitation Services and was waitlisted indefinitely. I applied for SSDI and am still involved in the appeals process which has already taken nearly a year and I have received no benefits as of yet. I was told it could take another year and a half to get a hearing. If I did not have a friend to live with who was willing and able to help me, I would have lost everything by now. I would be homeless. I only have a small Aging, Blind, and Disabled monthly cash benefit of $197 and food stamps that keep me afloat currently.
I am writing this to share with you the bleak reality of many mentally ill people. My survival and livelihood was attacked by the discriminatory practices of the State of WA, DSHS, and I was denied access to employment as a result. The lack of assistance by government programs that were developed to help people in my situation have initially been denied or waitlisted. This has placed extreme stress on me when I am already struggling with a severe and persistent mental illness. If I didn’t have the same upbringing or education as I thankfully did, perhaps I might have turned “violent” due to the strain this all has caused me. The point being that the mentally ill often are put in very stressful situations that are often caused by the stigma surrounding mental illness, and yet, we usually do not “break”. I know, in time, even with my illness, I will be back on my own two feet, contributing to society and hopefully being a benefit to others. I have always enjoyed helping others, NOT harming them.
I believe mental illness can play a role in those committing crimes that are violence, but there are other factors that create the psychological makeup of someone who would commit an atrocious act on that level. It is not stemming from mental illness alone. Often the individuals who are planning violent attacks are not going to seek treatment. Therefore, tighter regulations where access to guns is difficult to obtain might be our only hope to prevent some of these incidents of gun violence.
In the end, bringing light to the issues surrounding the mentally ill is not a bad thing. I agree that we need a better system where individuals struggling have easy access to quality treatment that is affordable. There also needs to be short term disability to prevent homelessness and immediate access to vocational rehabilitation programs that provide training to ensure employment is successful. We currently have a disability insurance program that can often take up to 2-3 years to begin receiving benefits. Putting the mentally ill under that level of stress where some are forced to the streets can cause anyone depression and despair. It is unacceptable treatment towards a population that suffers to no fault of their own. Could it cause certain people to be pushed over the edge? I don’t know. I only know that as a person with a mental illness I have, at times, been pushed to the edge, but have never once physically attacked anyone.
The mentally ill have become the scapegoat for the issue of gun violence. If you are going to scapegoat the mentally ill, at least address the issues that might push them over the edge in the first place. I personally see gun violence as an issue of easy access to guns that is continually fueled by a society that has become more and more detached and less connected. I also feel that the economic disparity in our country and the increase in hate speech in social media is also a problem. Gun violence is a complicated issue and should be tackled as such. There is no easy and simple fix. It will take time, effort, and commitment to decrease gun violence in our country.
I truly hope we can work together to begin making progress in the area of gun reform. It doesn’t have to be this way. We can change, we just have to believe we can.
A concerned citizen (who happens to live with a mental illness),
There is an unshared story that is told over and over to my tear-stained sheets on so many restless and sleepless nights. It’s a story that I feel others don’t want to hear. A story that is told in angry, broken phrases, and through desperate behaviors that has isolated me, at times, from those I love. This story is multi-layered and complex. There is so much exposition surrounding the plot, that themes go undiscovered and I wind up feeling frustrated, bewildered, and alone.
I’d like to share some of the re-occuring themes in the story of my life. So much of my story is touched by the mental illness I have struggled with for nearly three decades now. My illness does not define me, and yet, it has impacted nearly every area of my life. As with any major disease, mental illness deserves the respect and attention needed to aggressively pursue adequate treatment and support. Often due to it being highly stigmatized and misunderstood, many people dismiss and downplay the struggle. I’m writing to articulate, as best as I can, the untold struggle that surrounds mental illness. The following comes from my personal experiences living with a mental illness.
Common themes relating to my struggle with mental illness: 1. The struggle of identity, Is it the illness or me? Many disorders can cause mood fluctuations and perceptual distortions. When you are younger, you are continually developing your identity and learning about yourself. For those that struggle, you have an additional burden to bear during that process. If you cycle, like me, it can be difficult to separate two competing realities: one when stable and the other when in an episode of depression or mania.
It took me many years to recognize that my illness was not integrated into my identity. Often mania or deep depression derails me and various behaviors surface as a way to cope as effectively as possible. Things were further complicated by others in my life who responded harshly to various behaviors that would surface due to my illness. Because mental illness is often observed through behavior, others will attribute the symptoms of the illness as personality characteristics. How others perceive you is continually mirrored back to you and it can cause you to embrace your symptoms as your personality. It’s safe to say without having a mental illness that continually causes shifts in mood and perception, personality development occurs in a relatively normal fashion absent episodes that can color one’s perception of reality. That is not the case for many who struggle. Often, I have behaved in damaging ways and later realized I was symptomatic at the time. I later asked: “Was that really me?” I have concluded after years of struggling, that the essence of who I am exists absent my illness.
I am responsible for managing my illness as best as I can, but during times of decompensation I wish people would cut me some slack as it is not something I can control. The behavior that is displayed when episodic is not my personality, but a result of the symptoms of my disorder. Just as the expression of my illness is confusing for others, it is equally disorienting for me. There is a lot of unnecessary shame associated with episodically losing control of your perceptions and mood. 2. Dealing with continual lack of validation: When you have a visible illness or disability, people are more empathetic. The problem with having a silent and invisible illness is that people are not able to see the struggle so they downplay it. If there is one thing those suffering understand, it is the lack of others validating and offering support during the tough times you experience with your illness. I often wished that the mentally ill would be cheered on like those with physical disabilities. It would just feel nice to have others recognize how hard it is to accomplish certain things when you are experiencing an episode. It’s comical that some people feel having a mental illness is a ploy for attention or special treatment. Mental illness is still highly stigmatized and no one shops around for a mental health diagnosis to garner attention. It’s not an illness that attracts attention or support from others, in fact, it often pushes people away. Having a mental illness can be isolating. 3. To disclose or not to disclose, that is the question: Those who suffer with a mental illness, are continually presented with multiple opportunities to disclose or conceal their diagnosis. Most of us struggling are aware that disclosing our illness can bring unfavorable outcomes. People often lack the sensitivity and awareness to handle our disclosure in a positive and supportive manner. Disclosing a mental illness in the workplace can be damaging, although sometimes is necessary to request accommodations during times of decompensation. Even close friends and family will often struggle as to how to support someone suffering during an episode. Those who have never struggled often unintentionally say the wrong thing when trying to be helpful. Holding it in and hiding a diagnosis can be difficult and exhausting as well. The older I get, the more I realize how important it is to surround myself with people that are understanding and supportive. It’s a true act of self-care. 4. Having a mental illness, often means grieving missed opportunities in life. Due to my illness, I decided not to have children. I have also missed opportunities to land promotions or take a better job because I was actively struggling with my illness. I did not feel I could manage the stress of learning and adjusting to a new position at the time. I also feel had I not been sick during my college years, I would have been able to pursue a more competitive field. There have chunks of my life where I lost time and opportunities due to being in the grips of a severe mental illness. Days lost to anxiety and rumination, unable to truly relax and enjoy life. I have spent time grieving what I lost as a result of being so sick. So many times, I have expressed my longing for freedom, security, and safety. My illness has taken a lot of my time and energy. I don’t feel those who do not struggle understand that grief is another layer of having a mental illness. Grief includes bargaining, depression, and anger and the outward expression of these things are sometimes what others are responding to instead of the illness itself. There are layers of frustration, hurt, and disappointment that must be resolved when you live with a severe and persistent mental illness. 5. Living with a mental illness, sometimes means not being able to “let go” or detach from it. I’ve had many heated arguments with friends and family over my inability to “let go” when in an episode. People who do not suffer will often make the mistake of insisting that you can easily turn on or off a mood or perception. I have explained that if that were the case, I would not have the diagnosis of a mental illness. If I could change my state of depression or mania when in an episode that easily, I most definitely would. Remaining in a mood state and obsessing or behaving erratically does absolutely nothing to benefit me. While I’m doing the best I can to manage a chemical imbalance in the brain, I don’t need the additional stress of others demanding me to “stop it” or “let it go”. That approach often escalates an already explosive situation. If I could change course immediately when in choppy waters, I would! There is already so much shame associated with the inability to control certain unwanted thoughts and behavior that receiving criticism during these times only adds fuel to the fire. It’s better to validate and reassure than to scold and abandon. The real space for creating lasting change is done during times of less intensity where coping techniques can be learned. Some disorders do not have a cure and learning to manage the symptoms is the best approach in the end. Enlisting supportive people in your life can sometimes make the greatest difference in your process of recovery.
6. Invalidation and insults abound in media regarding the stigma of mental illness. If you struggle, it’s difficult to not feel bombarded daily by others on social media, television, and surprisingly even in support groups. When you have a mental illness, you start to see all the negative slurs and insults that exists in social media relating to mental illness. Every time there is an episode of gun violence, thousands point their fingers and cast blame on the “mentally ill”, reinforcing the stereotype that the mentally ill are “dangerous, unpredictable, and scary”. This is damaging for many reasons, but one is that it discourages people from wanting to get help because they don’t want to be labeled as “crazy or dangerous”. It paints an inaccurate depiction of mental illness and denies the reality that most of the mentally ill are not dangerous, but are more likely to be a victim instead. Social media,and even support groups for people struggling with Bipolar disorder, are often full of negative remarks that depict people who suffer as “hell to live with, evil, abusive, etc.”. I find many of these comments disheartening and damaging to those living with the disorder. Abuse should never be tolerated, but those who have suffered with abuse would be better off gaining support from a secured site as it is insensitive to those living with the disorder.
I could probably think of more layers that intensify the symptoms of having a mental illness. It is a true struggle that no individual would ever ask for or desire. Often a mental illness will rob you of time, energy, and relationships. It is very devastating in the end.
I wrote this piece to provide a true depiction of the layers surrounding mental illness. I am an advocate for early and aggressive intervention and treatment for those suffering. I believe education and awareness of these issues will help those suffering feel less alienated as people will be more accepting and accommodating if they understand the struggle. I long for the time when the mentally ill are embraced in society and in the workplace. Those who are more severe will also hopefully be invested in and given the opportunity to work and engage in social events if they choose. I will continue to use my voice as a agent of change in a world that is lagging behind on issues concerning the mentally ill. There is a lot of work to be done!
It’s broken. It’s shattered. And, it’s literally killing people every single day.
The system that is currently in place for serving individuals who are struggling with a mental illness is fragmented, fractured, and incompetent. I have been a recipient of mental health services for nearly 30 years now and feel that both access to and quality of treatment has gotten worse, not better, over time. I believe many of us want to see change for ourselves and for our loved ones who struggle, and yet, the problem seems overwhelming. Where to begin? Ultimately, the care provided for this population of people needs to be driven by a culture that cultivates sensitivity and demands practices that ensure the preservation of the patient’s dignity. There are many systems that need to work collectively to ensure that patients are treated with respect and in the same manner as one would treat a heart attack or stroke patient. When our culture begins to value the lives of those who are struggling with a mental illness, the potential for change will increase exponentially, not only for the individual, but for the community as well.
I would like to offer some solutions from the consumer’s point of view. I have been hospitalized 4 times in-patient for mania and depression. I have never been committed and have always went voluntarily to the hospital, seeking help for the symptoms I was having at the time. The first two hospitalizations were in the early ’90s and the last two were in the years: 2015 and 2017. The last two experiences were actually much worse, which was surprising to me as I thought the quality of treatment would have improved from the past. It was actually much worse.
Here are some of my personal take aways from my past two inpatient hospital stays. I can tell you that I have needed treatment this past year and did not feel “safe” to go to the hospital. I feel safer staying out of the hospital with a friend, than ever going into an a psychiatric hospital for crisis-stabilization treatment. Here’s why:
Crisis stabilization is not treatment. It has become basically a “holding tank” where those in crisis are admitted, medicated heavily, and provided some basic coping tools throughout their stay in groups they attend while there. There is little to no therapy or processing and discharges are often not thoughtfully planned or put together. I was discharged from a hospital with no services set up because the social worker refused to help me access services because I had not yet ended the relationship with my current provider who was a referral source for the hospital. The social worker placed a referral source above helping me access more appropriate services that were closer in proximity to me. I felt by going into the hospital for severe depression and suicidal ideation, I would leave with services set up to ensure continuity of care. The social worker of the hospital placed business needs and the relationship with her referral source over my recovery process. I was willing once out of the hospital to contact my provider who was roughly an hour away from where I have recently moved to, but was dismayed when services and new providers could not be set up prior to leaving the hospital to avoid disruption of care. The lack of treatment, evaluation, and discharge planning left me feeling every bit as depressed as when I entered the hospital, but with the resolve to not ever be admitted again.
Another concern is that they put women and men into treatment together, often on the same hall in close proximity. People might feel that this is an acceptable practice considering that they do 15 minutes checks to ensure the safety of the patients. However, my personal experience is that it is a major distraction and often impedes the process of recovery. Often people who are struggling have poor boundaries and are unable to protect themselves. Some patients might be especially vulnerable due to hyper-sexuality, a symptom of mania. I briefly worked at a psych hospital where I learned that two patients were caught having sex together on the unit. This upset me because when someone is manic and unable to execute good judgment, I feel they should be protected from an occurrence like this. If she had become pregnant from this occurrence, it could have become a liability for the hospital. Some female patients might also be struggling with trauma issues and certain male patients, who lack boundaries, may perpetually trigger female patients. Male patients also can be victims of female patients who lack boundaries as well. I was triggered by a male patient rapping violent lyrics while pacing outside my door, using my name within the rap song. I informed the male nurse that it was troubling me and he downplayed my concerns, stating it is just his mania and rolled his eyes at me. I felt vulnerable and scared when I already was struggling.
Patients are treated like prisoners. I agree that the environment must be kept safe for the patients and the staff. Still yet, there are some instances where this type of treatment becomes detrimental to recovery. Often patients of varying degrees of severity are placed together and the environment is stark and bleak. I can remember a hospital stay where I had brought a coloring book with me to color in to help me cope. I was denied access to my coloring book because it was non-conventional with cuss words in it. It may seem silly to most, but the coloring book represented security to me in an unfamiliar space when I was struggling with severe anxiety and depression. Often, you are stripped of everything you own and do not have access to resources that can provide comfort and lower anxiety.
At one hospital, I was made to wear a uniform initially and it felt demeaning and degrading. At this same hospital, staff were separated from the patients by a wall with glass so they could look out and observe patients. It felt, to me, like I were an animal in the zoo being observed. It also made me feel unsafe as the staff were divided from the patients. I do understand a need for a separate space for staff for the completion of paperwork and what not, but to have staff separated from patients in this way felt dehumanizing. Every move made, even getting a drink of water, had to be granted permission and often you had to prove yourself over time to earn privileges, such as going outside. I have never gone to jail, harmed anyone, or fled treatment, so I felt punished. The experience was frustrating to say the least. Certain staff who were less educated and informed than I am about my illness, were abusive with the power they were granted in these situations. I was overmedicated a few times and was even threatened when I declined to take the medication prescribed because I knew it was too much. There were other patients who expressed they felt overmedicated as well. As a mental health patient, you are aware that others will doubt your credibility regarding your concerns, and this allows for little protection in the way of poor quality of care or mistreatment.
The length of stay is often inadequate for stabilization and longer treatment facilities, such as residential care, are out of reach financially for most patients. Often a patient is discharged at the first signs of stabilization, which is defined as not being a danger to themselves or others. However, most medications can take quite a bit of time to actually demonstrate effectiveness and by the time the patient begins to have side effects or shows the medication to be ineffective, they are already out in the community not being closely monitored. This results in a revolving door for many chronically mentally ill where the protocol is to stabilize, rather than treat the mental illness. My nephew has remained sick for nearly half a decade or more, bouncing in and out of hospitals for brief stays, but never truly having thorough evaluations and treatment. In the past, hospital stays actually included treatment and were longer in duration to ensure that progress and stabilization occurred prior to discharge. The current system is a band-aid approach to care and results in an over-burdened, costly model of care where people do not recover. Residential care, which is longer in duration and includes intensive treatment, is often denied by most insurance companies, rendering the majority of mentally ill lacking access to what is needed to truly heal and recover.
In addition to the lack of appropriate treatment in inpatient settings, various therapeutic outpatient programs often have long waitlists and/or not covered by Medicaid or other insurance plans a patient may have. I have currently been waiting to begin Dialectical Behavior Therapy (DBT) for over six months now. I have applied for a Health Care Grant to cover the cost of the program and have not heard back yet if I am awarded the grant. I am also stuck waiting in the grueling process of trying to get onto SSDI and SSI benefits. If I had these benefits, I could afford the therapy I need to get well.
Lack of access to effective treatment for the mentally ill is further complicated by discrimination in the workplace and stigma which makes it challenging to maintain employment. To add insult to injury, the struggling individual with a mental illness who loses employment not only will often lose their insurance and providers, but there literally is no safety net for those who fall. Social security programs in the United States can take up to 3 years to be approved and people often end up homeless or with an exacerbation of their illness due to the stress of not having any financial assistance to survive. Programs such as vocational rehabilitation exists, but often have long waitlists to receive services. It doesn’t pay to have a mental illness in America, one often ends up traumatized by the system with their only sin being that they have an illness they never caused or desired. It is a harsh reality many of us are living with every day, but our concerns are often overlooked and ignored as our credibility is continually in question due to the stigma surrounding our struggle.
I have been advised by therapist and friends not to return to work until I complete the DBT programs which can take up to a year. I may not realistically be able to follow their advice because I am at risk of losing everything if I do not have some type of income. I believe that working will always be difficult for me, but possibly doable if employers could be open to employing and accommodating an individual struggling with a mental illness. I was doing a good job in the past, but needed a more flexible schedule and to possibly work from home occasionally. I felt what I requested was doable and absent undue hardship on my employer, but I was let go anyhow at my very first accommodations meeting after a medical leave for my illness that my employer had encouraged. It was devastating and caused a relapse. I was never granted the opportunity to attempt working with accommodations in place. I quickly applied for vocational rehabilitation services through the state, was determined eligible, but placed on a waiting list. That was 8 months ago. It has been 10 months since I applied for SSDI and SSI and I have not received any assistance. Again, there literally is NO safety net for individuals who are struggling with a mental illness and the programs that provide treatment and vocational rehabilitation programs are often waitlisted or unaffordable , rendering them inaccessible to most people.
My goal in writing this is to bring awareness to the issues surrounding recovery for the mentally ill. Even if you are educated and aware of various programs that provide assistance, access to them is severely limited. I have tried every avenue to get well and have been waitlisted, often with no date in the future to guarantee services. I have been denied financial assistance from SSI and SSDI to meet my basic living needs. Like millions of others waiting, I have to secure an attorney and fight which may take up to two more years. I currently have other un-met medical needs, such as a missing front tooth from an accident when I was 17, where the crown fell out that I cannot address right now because implants are too expensive. I am living with a friend and receiving some help temporarily from my mother, but the assistance I am receiving from friends and family cannot go on indefinitely as it is placing strain on them as well.
Change needs to occur and now to address the crisis surrounding the poor quality of care for people living with a mental illness who become unstable and require help. Here is my short list of suggestions that need immediate action as too many innocent people are experiencing abuse and neglect in our broken healthcare system.
Implement a consumer driven task force in each state composed of individuals who struggle with mental illness and their loved ones to ensure inpatient psych hospitals deliver quality care to their clients. This should be part of the regulations to ensure the voice of those struggling is heard loud and clear. We are the consumer and must demand better.
States must implement short term disability that is available immediately to ensure patients do not have their care disrupted and they can meet their basic needs to survive. Doing so, will facilitate recovery and programs such as SSI and SSDI will be a last resort.
Recipients of the short term disability program should be required to receive vocational rehabilitation services as well as residential and/or outpatient care to facilitate recovery.
We must invest in early treatment that is aggressive and intensive as early intervention along with vocational training will possibly provide a true path to recovery and less reliance on welfare programs in the future will be achieved as a result.
The Americans with Disabilities Act (ADA) must be revamped to include specific provisions that hold workplaces accountable for ensuring that discriminatory practices do not occur. This will give the Equal Employment Opportunity Commission (EEOC) the “teeth” needed to handle discrimination claims more quickly and aggressively.
Places of employment should be provided education on how to appropriately accommodate individuals suffering with a mental illness in the workplace.
I hope some of my ideas and concerns resonate with some of you who also want to see change. I am passionate about these issues because I have suffered and I know many others who have as well. I hope that I can join others one day to truly make a difference in the lives of those struggling with mental illnesses. I want them to know that they are very worthy of the lives they desire for themselves and to keep moving forward as difficult as it can be on certain days. There are people out there who understand and “see you” and are rooting for change. Together our words will make a difference and I am hopeful one day soon to be engaged actively in endeavors that bring forth change in these arenas.
I’ve been fighting a war with my family for too long now. A war to feel believed, seen, valued, and considered. A war to stop the enabling of addiction and dangerous behaviors that are harming the ones I love. A war to get people the help they need so that they can recover and have lives that are peaceful. A war to bring forgiveness and closeness to our family. A war that always ends with me raging into the battlefield, losing my dignity, and feeling like a failure. I don’t want to die, but I don’t want to live fighting this war any longer that I never win, not even one, single battle. And my family isn’t winning either. Those struggling do not have access to quality care or to economic opportunities to empower them. This life, is becoming too heavy.
I don’t really want to die, But…
I’ve been battling a war of mental illness for far to long, with too many barriers to treatment. I continue to fall through the cracks, even though I am educated and an advocate for myself. Treatment has been interrupted over and over again by insurance being dropped when I’ve lost jobs. I’ve been told for nearly a decade now that DBT Therapy is the most effective treatment for my condition, and yet, I have not been able to access it due to costs, waitlists, or loss of insurance coverage. I am currently on a waitlist for DBT and have applied for a grant to afford the cost of the program. I have been advised by my therapist to not work until I go through the treatment which is 6 months to a year. I am likely to fail at work again if I attempt working and then treatment will be disrupted. So I wait anxiously for an answer on the funding and for my turn to come up on the waitlist so I can finally get help.
As a mental health patient, I have experienced poor treatment where I waited 36 hours to be admitted only to be forced to leave treatment the next day when I was not ready to go. I have been treated poorly in the ER and have had symptoms ignored while practitioners made inappropriate comments about my mental health status. Due to not having stability at work, I have lost insurance coverage that has inevitably disrupted care and continuity with providers and as a result I haven’t gotten the treatment needed to truly succeed at work. It is a vicious cycle that has nearly destroyed my confidence and health.
I don’t really want to die, But…
I’ve been waging a war for years against employment discrimination that has left me unemployed and devastated. After experiencing discrimination at several workplaces when I requested accommodations for my mental illness, I have decided to throw the towel in for now. It’s not only physically and mentally draining to work with a mental illness, but it is traumatizing when individuals treat you unjustly after having disclosed significant private information about a highly stigmatized illness. I have repeatedly, in good faith, handed over my personal health information that was requested to put accommodations in place and each time it backfired. I left each job feeling more and more vulnerable and without a recommendation for employment from my supervisor. My faith was completely shaken when one of my last employers, a state agency that provides services for individuals with disabilities, actually denied me access to employment, firing me after a medical leave at my very first accommodations meeting. I was devastated. Again, it is hard enough to work through panic attacks, severe depression and anxiety, mania, etc. without the additional stress of discriminatory practices.
My quality of work was never in question at any job I held, it was the symptoms of my illness that caused concern and employers were unwilling to accommodate me. As a result, my right to work has been denied. Treatment for my illness has been interrupted over and over again due to loss of medical coverage and having to move to avoid homelessness. This has caused numerous relapses of depression and anxiety. I have even developed PTSD from losing jobs, experiencing nightmares and severe panic attacks when starting a new position. It’s been a long and difficult struggle that most dismiss because they lack awareness and understanding of what it is like to live with a mental illness.
I don’t really want to die, But…
I am fighting a war to meet my basics needs while government programs like SSDI and SSI reinforce to me that I am insignificant and unworthy. In the midst of severe stress and anxiety where I am having to rely on others to help me with housing and my car payment, SSDI and SSI are hanging up on me, lying to me, and blaming me for mistakes hey have made in processing my appeal for my disability benefits. They lost my paperwork of 95 pages, joked about shredding it, and once it was resubmitted at their request, did not use it in deciding my case. And even though it was not my error, they have refused to redo it.
I have been researching reviews of these programs and their behavior is common. Apparently, these agencies likes to torment those who are already on the edge. Listen up America, we pay into a system that isn’t there for us when we one day may become disabled and need the help. The process is beyond grueling and torturous, especially since I would much rather work if only I could!! I am living with my ex-spouse out of need, am having my parents help with my car payment, am visiting the food bank, receiving food stamps and a cash benefit of $197 monthly from an Aging, Blind, and Disabled program. I’ve been deemed eligible for Vocational Rehabilitation, but I have been waitlisted for these programs as well. Guess what America? You can be doing everything right: trying to get treatment, trying to get training, etc. and it simply isn’t accessible in our country!!
I don’t really want to die, But…
I in a constant monthly war with my hormones that wreak havoc on my physical, mental, and emotional well-being. I have been struggling for years with Pre-menstrual Dysphoric Disorder. I have literally sobbed in doctor offices and have explained over and over that each month for 3-4 days I am suicidal and feel like hell. I often want to go to the ER because my whole body hurts and the anxiety is un-paralled. No one seems to understand my sense of urgency or how bad I feel. It has destroyed jobs and relationships. And, is literally a hell of sorts every single month. I found out recently 15% of people who suffer with PMDD attempt suicide. I feel somewhat validated that I am not alone, but still no one is helping me and I am often dismissed and invalidated.
I don’t really want to die, But…
I grieving the loss from a war I waged for nearly a decade with a Narc where dreams were dashed and faith destroyed. I was abused physically and emotionally and wish I would have had the self esteem to leave earlier. The relationship helped to carve out my self esteem, setting the stage for self love. I grieve the loss of time, loss of family I could have formed, and potentially the opportunity to have children. While others post pictures of their beautiful children on FB and social media, I’m reminded continually of a few bad choices I made which not only robbed me of potentially a family, but also nearly destroyed my trust in men and in myself. I am fearful to start over again and I’m getting older. I am not completely hopeless, but it is a hurdle to overcome.
And so, I really don’t want to die. I was serious about that. I want to live. And, I actually want to GIVE even though I have little at the moment. I still have dreams to make this world a better place despite the struggles listed above. I want to help others realize their dreams. I’m writing to bring awareness of the system failures that we have in this country from incompetence to discriminatory practices that are “breaking people”. We simply must help and love one another. We must do this for each other, You and I. Post this message if you like and share it. I earnestly want to hear other people’s stories of struggle as I know many are struggling in a system that is preventing people from recovering. The systems need to change and people need to turn towards one another, not away. I don’t have all the answers, I do have ideas…. and I have love. Love is what is needed to turn things around. Spread it… every single day.
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