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!
I am ready to walk away from the wreckage that has suffocated and trapped me, like a caged songbird, unable to sing and soar, for so long.
I’m tired of being unhappy and devalued. Living in the shadows of a sociopath that has so much power and influence, my voice has often been muted. My actions are continually misunderstood and I’ve endured years of scapegoating, gaslighting, and character smearing. All because some are unwilling to acknowledge the truth and want to continue living in denial and dysfunction. I grow weary of defending what I know to be true and am often alienated because I confront behavior that I know to be reckless and dangerous, even. Admittedly, I’ve sometimes lost my dignity standing up for those who are truly vulnerable in the family system. Nothing feels worse, to me, than watching people you love who are drowning and having members of your family block you from being able to help them. The helplessness I have felt lead to my own hardening and rage.
Today is a new day. I forgive those who have hurt me and my loved ones and I release any hold they ever had on me. I forgive myself for begging for their love, attention, and time; living in an undignified position for so long.
Healing is not a linear process and I will not be surprised if I continue to slip every now and again. But, I do feel there has been change and growth. My ability to recognize and confront gaslighting when it occurs so that it doesn’t keep me “spinning”, has greatly improved. I also am beginning to “rage” less and express my anger more appropriately. For someone who was not allowed to express anger growing up, these steps are progress for me. As a child, and even well into my adult years, I feared expressing anger and repressed it. I felt and believed that “bucking the system” and expressing anger would place my life at risk. And so, I was denied the expression of it. When I finally began to use my voice, I often raged. There were times I even “blacked out” briefly when raging, not knowing how I got from point A to point B. I hold a lot of anger which is often sadness under the surface. I have an immense amount of grieving to do for what I’ve lost in this lifetime. But, for now…. one day at a time, right? And, I am experiencing many more moments of joy now that I have released some of the pain that I was carrying for so long.
I do have many regrets. I wish I had departed years earlier. I wish I had not tried so hard. I wish I had not moved my life, losing money and resources, to try and support relationships and help loved ones who did not value me. I regret the times I lashed out in anger, but more so regret the effort and energy I expended trying to help those struggling that went unnoticed and unappreciated. It’s not that I needed that much from them, but I sacrificed a lot for so little. And ultimately, all I truly wanted was connection in the end.
There are things I do not regret saying or doing.
I will never regret the times I stood up for the vulnerable children and the disabled adults living in the home. I won’t regret the lessons I’ve learned. I’ve learned to value and love myself and have gained a greater appreciation for my capacity to love and to forgive.
I will never regret confronting the dishonesty, gaslighting, emotional abuse, discarding, and stonewalling that I endured. I realize now that I stayed too long and continued to “rage”. I even grew embittered and jaded for awhile. At times, I admit that I became abusive myself. I do not excuse or justify my own mistakes or abuse. I take full accountability for them and wish I would have done better. I was learning how to let go while still holding on and fighting for those I loved. I knew I was losing the fight as nothing changed in the end. I know it got messy and even ugly, at times. I wish I could have just let people go without raging. Still, I do not regret the times I was able to retain my dignity and stand up for myself.
I am still not the greatest at getting my needs met in relationships. I have always gravitated towards those that use me or who are unhealthy. I can see now looking back how sick I was and that much of how I coped was ineffective. That being said, so many of my relationships have been hopeless. I was drawn to those unwilling to connect and I can see this more than likely developed from a lifetime of always longing, but never being satiated, full, or feeling safe when it came to intimacy and connection. I spent my entire life desiring visibility and connection, only to continue demanding it from those who were unwilling to provide it in the way I needed. There were always excuses and justifications as to why connection wasn’t realized. Often, I was blamed for wanting too much. This caused a lot of self loathing, anxiety, and insecurity. It took time for me to believe that I actually wasn’t getting my needs met and it wasn’t my fault. I was not asking for too much, nor was I ever “too much”. It took years of analyzing the behavior of my loved ones to garner the proof I needed to finally understand that those around me were truly struggling and sick in their own way. I spent years trying to convince them to get help to no avail.
The most difficult lesson in all of this was realizing that I had to let go of the dream of ever having a family that was close-knit. I don’t feel a part of my family. They don’t know who I am anymore and they often deny my pain and struggle related to the dysfunction, neglect, and abuse. It has become too hard for our two very different perceptions of the past and present to sit in the same space. I have tried for too many years and I am exhausted, sad, and even in chronic pain from the continual conflict and grief. I know what I have to do and I am taking the steps to do it.
I honestly think I am at the apex of acceptance. I can see looking back that I was unwilling to fully accept the reality that I wasn’t going to have what I wanted in this lifetime.
I wanted a close-knit family.
Because, I was unable to have children, I wanted to be a part of my sister’s grandchildren’s lives.
I wanted my nieces and nephews to heal from their upbringing and be healthy.
I wanted my marriage to work out. When it didn’t, I wanted my second significant relationship to work out.
I wanted to completely recover from the mental health struggles I live with, and instead, I now have additional diagnoses and am living on disability.
I wanted to date again and find true love. I simply want to love someone and be loved in return.
I wanted to have success in my career. I became to sick a few years ago and had to get onto disability so that I could take the time to recover as well as have a continuity of care. I am still struggling to get all my medical needs met (particularly with the pandemic).
I wanted to have a home one day and financial stability. This looks unlikely, but who knows?
And so, some of the above may not ever be realized. I am determined to start small.
Forgive myself. Forgive others.
Live in the present.
Enjoy what simple pleasures the day offers.
Stretch and sing more.
Do more of what makes me happy and joyful.
Set realistic goals and celebrate achieving them.
I am no longer in a race against others, nor will I compare myself to their successes or struggles.
I am me. I am ok. I am enough. And, most importantly, I am healing.
It is hard work. It is a process. And, the journey along the way is more precious and profound than any destination point a long the way.
I’ll be posting from time to time these moments of JOY. That is what I want my focus to be on in the end.
I accept what I have lost, but will do my best to no longer dwell on it, losing more precious time.
The following are pics from a little trip I took to Boulder City, NV and Hoover Dam. This area, along with a few others, are places I am considering moving to in time. Life is taking another turn. This time, I want my eyes to be wide open and my heart less heavy!
With the use Storyblocks.com for video clips and music, I have adapted an earlier post of mine to include a short video, using my voice as the narrator. Original post was written on May 26, 2019 and is copied below. I hope you enjoy!
This is Our time: Fast, Fleeting, and magnificent
This is our time. It will be fast and fleeting, yet magical and magnificent. We will always be moving about, passing by one another, while we occupy the greater space that holds us here with gravity. We were thrust here and pushed into the brightness, piercing the new air with the cry of a new born baby. Soon after, the process of imprinting began as the multiple layers of “our time” carved out an identity, giving our form meaning and definition. Unable to escape “our time”, we have moved through it, often embracing it as we stumble through life with discovery and delight.
This is our time. In this time of technology, information is shared instantly and in exponential quantities. Unlike in the past, we have a greater ability to connect with one another, and yet, this saturation and quality of connection is often times eroding relationships, leaving us feeling alienated and alone. Many of us living right now remember life without the use of a computer or cell phone. We reminisce of a life that was not digitized. Polaroid cameras, rotary phones, typewriters, 8 tracks, etc. are all things of the past, but still are very much alive in our collective memory. If were to take a snapshot of those living right now, some still with us can remember a time when they would gather around the radio in the evening for entertainment. Others will share they have never known life without the existence of a smart phone. In this same beautiful space, we have a young child singing “baby shark” while sitting on the lap of her great Grandfather who fought in WWII. And in this slice of life, we have a time that we can call “our own”. You and I are here, together, muddling through this thing called life.
In this time that is ours, we are alive and active, making history while altering the planet as we know it. Some of us will live quiet lives that may seem to go unnoticed. Others of us may influence our communities and impact the lives of those around us. And still yet, there will be the trailblazers whose existence shapes the zeitgeist of “our time”. Even so, as sure as our world turns and the sun rises and sets, it is “our time” to be alive, to breathe, to learn, and to love. And there is no other time for us, but right now, which is pregnant with possibility.
This is truly our time. As we dwell together under the starry skies, we’ll indulge in what the planet has to offer us in the way of natural wonders, culinary endeavors, and cultural practices. Many of us will venture outside of our comfort zones to explore lands that are foreign to us. In our limited time here together, we might sometimes take for granted the extensive and affordable ways in which we can travel. Some of us will travel extensively for work and/or pleasure and our appreciation for diversity among landscapes, culture, and people will grow, leading to a very rich life no matter our monetary worth.
During this time together on earth, we’ll experience heartache and disappointment. We will all start at different places with different experiences as well as different abilities and strengths. We may get swept up in activities or with people that take us away from ourselves, becoming lost. Some who lose their way will resurface after a steady climb into awareness, self forgiveness, and self love. There will be birthdays, marriages, births, and deaths. And during these times we will know joy, elation, contentment, pain, and possibly even suffering. We will, at times, feel alone and overwhelmed. We may fear death and getting older. And yet, in this time that we are here together, there will be times that we feel truly alive. In this space, when you and I are sharing the same air and earth, it will be our energy and endeavors that define “our time”. I’d like to think that in my lifetime people will turn towards one another with acknowledgement that we, “humanity”, are nothing short of amazing, possessing the potential to connect in endless ways. I believe this is already occurring in less organized ways on various social media sites, but feel we are really just now embarking on this journey of increased awareness and connection.
The desire of humanity to connect is what is fueling so much of the development of technology. Interestingly enough, it has opened up a window for many to have a glimpse of the world, exposing people to different cultures and ideas. This can only bring us closer, providing people with the knowledge to break barriers and facilitate not only tolerance, but concern and caring. This level of exposure to one another and to other cultures around our world is defining us. It may be the perfect tool in time to harness the collective energy to care for our planet and the creatures that inhabit it.
This is OUR TIME! It’s going to go fast, I’m afraid. I’m nearly 47 and I’ll soon be sliding into my fifties like a baseball players slides into home base. I’ve been living it hard, making mistakes, and often becoming distracted. I feel like I’ve turned around once and here I am, older, with some back problems and less energetic than I used to be. I’ve lost loved ones, fallen in love a few times and have went through the painful process of letting go. I’ve turned inward, at times, in depression and tried to ignore the brutality of the world, sheltering myself from a few storms in my life. But, I’m still here, along with you and so many others and this is it!!
We have absolutely no choice in how we entered the world and we will not have a choice in how we leave it. Some do take their own lives, but it is my belief that to do so is part of an illness, not a choice. So, while we are here breathing, living, and loving, take time to feel the amazing energy and pulse that is US! It truly is OUR TIME and I hope one day before it is the end, I see you in passing, strolling about, tilting your head back in laughter, at your friend beside you. Maybe you are in that group posing in front of some national monument, trying to get the perfect selfie. Or could that be you, a child jumping in the waves with delight? Or the older couple, holding hands on a park bench? I believe it is all of us. We are more alike than different, and it is OUR TIME. I hope you are enjoying it!
What piece of work is a man, how noble in reason, how infinite in faculties, in form and moving, how express and admirable in action, how like an angel in apprehension, how like a god!
A couple of weeks ago, I spent a few days engaged in a partial hospitalization program with the hope that I would gain a few more coping skills that would reduce the intensity of my PTSD and Bipolar 1 symptoms. The program actually ended up to be a more of a “one size fits all” program and it wasn’t truly beneficial to me. Without going into too many details, I had a couple of incidents of conflict where I felt disrespected by some of the employees there. This is not all that uncommon. It happens. Employees are just people in the end and some are not always sensitive, others might be experiencing a “bad day”, and still others are just there to “pick up a pay check”. The experience, however, got me to thinking about what I would like to say sometimes to those who treat me for my mental illness on my “worst days”. I decided to write an open letter to those who provide mental healthcare services, particularly those who do so in an inpatient setting or intensive outpatient program. The following sums up what I want those treating me to know. Maybe it will resonate with you as well.
Dear Mental Healthcare Provider,
To you, I am more than likely just another patient in a fast-paced program that has the goal of crisis-stabilization. I am one of many that you serve in a busy environment where safety is more than likely your primary concern. With the amount of people coming and going, it is to be expected that you might not ever truly know me. Between facilitating groups, completing necessary documentation, and other miscellaneous duties, there is very little time to actually connect to each patient in a meaningful and memorable way. In order to ensure safety, and a routine where programs run efficiently, the relationship between patient and provider is not one of equal power. Your role by it’s very nature, especially in an inpatient setting, is to enforce boundaries and rules to maintain the type of environment where people can receive the help they need in order to return to baseline. This dynamic, albeit necessary in ways, can be difficult for some of us to adapt to as it can feel not only constraining, but even oppressive, at times. In addition, the often sterile environment of some hospital settings and the loss of personal freedom, can seem disorienting and demoralizing to someone seeking help.
As a patient, I am coming to you at my worst, often in a place where I may not be in complete control of my impulses, moods, or perceptions. You see me when I am most vulnerable, often in the throes of an illness that I am doing my best to manage. Despite my efforts, there are times that the illness takes a hold, and I need a little help to return to my baseline. There is a lot of shame and embarrassment when I have to admit to myself and others that I need help to cope and manage the chronic illness of Bipolar 1 that occasionally rears it’s ugly head, robbing me of my time, joy, relationships, and even jobs.
When I walk through your doors or am brought in by an ambulance, I am instantly reminded of how powerless I am, at times, to this debilitating illness. All my possessions, like my purse and anything else I bring in with me to the hospital, gets stripped from me and I am asked to stand unclothed in a robe so that someone on staff can “search me”. I can remember being asked to do this each time I have been in inpatient, and yet, the actual occurrence of it I have conveniently blocked from my memory. As a victim of sexual assault, this is particularly dehumanizing and distressing for me. At one inpatient placement, I even was forced to wear a blue jumpsuit very similar to what is worn in a prison setting. The contents of my purse were dumped into a plastic bag. I felt violated, having my privacy breeched and felt nearly treated as if I were a criminal.
When you see me, I am coming to you to at my “worst” asking for your for help, but it can feel sometimes like I am part of a machine that doesn’t value or see my humanity. The first few days of treatment can feel somewhat numbing. Pink Floyd’s song: “Comfortably Numb”, comes to mind and the medications that I am pushed to take during an inpatient stay feels like what is conveyed in the lyrics: “just another pin prick” and “there will be no more, “Ahhahhhaaa, But you might feel a little sick”. Often the first day or two, I feel like just “another brick in the wall”, numb and disoriented, wishing I were anywhere else but back in this spot, vulnerable and raw.
When I walk through the hospital doors asking for your help, I carry with me 32 years of experience as a consumer of mental health services. I also am informed and aware of my patient rights. I may be struggling, but just in the past week or so, I was at work serving clientele as a social worker. I was sick and struggling, but holding it all together. I came to you because I had the insight and awareness to acknowledge that I need the help. I want to be seen as someone who is currently struggling, but respected as an individual who on most days is competent and insightful. Ultimately, I want to be seen as an individual who has many strengths, not just a mental illness you are treating.
Even on my worst days, when I am receiving care, I want to feel that I have a sense of agency over my healthcare. I want you to ask for my input and respect my right to decline treatment. Sometimes, it can take time for me to research and decide what I feel is best for my health. I’ve had nurses “talk over me”, even insist I was delusional, because I wouldn’t take the medications that were initially ordered by the prescribing doctor at the hospital. I once even had a nurse threaten to “tie me up in a rubber room and inject me with my medications” if I continued to refuse. Sadly, due to the stigma surrounding my mental illness I know if I had reported this incident I would have not be seen as credible. Yet, many of us in treatment have endured abuses or threats like the one above.
Just because I live with a mental illness and am requesting help, does not mean that I am incapable, even while hospitalized, of making informed choices. Had I taken the medications prescribed by the doctor during some of my stays, it would have been too much for me. I know my body and I also know my rights. I have the right to decline medications. I earnestly am asking you to educate me, provide me with the information about the medication you are prescribing, allow me to research it, and even provide alternatives. Wouldn’t you want the same for yourself if hospitalized?
I realize that providers are just people and they make mistakes. I’ve had to remind a few of my providers that I couldn’t take certain medications due to drug interactions. Sometimes, they are too busy to look up a medication or have forgotten that an interaction exists. I realize providers are not walking encyclopedias and their knowledge may be limited. And I also understand that most people willingly trust what the doctor “orders”. I am someone who has had a few truly negative and scary experiences while taking medications and I am hesitant to start any new drug. Please give me the time I need so that I will feel comfortable trying another new medication. And please don’t take it personally if I question a medication you prescribe or even decline it. It is my body and I will do what I feel is safe and comfortable for me.
I also again want to remind you that I am at my worst when I come to you. I am sick, vulnerable, and often raw. I again have to open up and tell a complete stranger things about myself that might be hard, stressful, and downright painful. I feel exhausted and depressed after having to explain my history and symptoms to, yet again, another individual that, in a few days, I will never see again. The mere thought of disclosing and repeating my history once again can send me into panic and is nauseating for me. To you, I might be the new admit going to bed 107 that you have to quickly assess before the next patient arrives. But, for me, the whole experience feels dehumanizing and it often makes me feel powerless and small.
I sit in the chair slumped over across from you, often sharing the things I don’t want to share with anyone. So, please excuse me if I appear on edge, easily angered, defensive, or irritated. For me, I am at the beginning of a stay where I will be thrust into groups with strangers, sleeping in a room on an uncomfortable bed with a roommate I do not know, and told when to eat and where I need to be for the next few days. Nothing feels normal at the moment.
For you, it is just another day at work and you’ll be home to your creature comforts soon enough. Your demeanor and approach with me can set me at ease and even bring a faint smile to my face, or it can make me feel ashamed, angered, or numb. I understand you are human as well, but I hope you are able to understand that I truly am at my “worst” and please be sensitive to that fact. It will make such a huge difference in my stay if you do.
During my stay with you, I will sit in groups and listen to some of the same approaches and interventions that have been introduced to me before. Initially, I may feel, on a certain level, that for me to wind up here again, I must of failed in some way. There is a lot of shame, grief, and even rage, that I am feeling. I wonder to myself: How did I wind up here again? I long for the group that tells me I am OKAY, despite my struggle of living with a mental illness. I appreciate the rare facilitator that starts the group out telling us that our chronic illnesses are nothing to be ashamed of and that we are not here because we “behaved badly” or that we somehow caused our illness. There is no shame in struggling. Many people “behave poorly” and have unhealthy habits, but do not land in an inpatient psychiatric setting requiring care. A mental illness is a true illness and if unhealthy habits were responsible for the struggle, many more people would carry a diagnosis. Please remember that I have an illness, not a “behavior issue” and that I do truly try to manage it.
I will also add while I am at it, that I wish I had a private room and the hospital would separate the men from women, particularly not allowing them to sleep on the same halls. This was distressing and distracting for me. I would also like for the environment to be less sterile and more homelike and for groups to be designed with functioning level in mind. Hey, I can have a wish list, right? Some groups are difficult for me to sit through because the information is not new to me.
On my worst days, when I find myself in an inpatient or intensive outpatient setting, please treat me exactly as you would like to be treated. I can respect certain safety measures as I am aware that they protect me as well as others in the program. And yet, please don’t talk “over me”, or refuse to accept my input. I would prefer you not ransack my purse or insist I dress in a blue suit. I also want to be seen as an individual.
And, please, if I have a “meltdown” or an angry outburst and I later come to you to share why I was upset or I wish to apologize, it would be nice if you accepted my effort to resolve things graciously. There have been incidents in the past where I have tried to smooth things over and it was met with stonewalling and a complete disregard for my struggle. Please remember if I am in the hospital for my mood disorder, I might not have the best control over myself. If I did, I would not need to be in an inpatient setting. Like others, there is a lot of shame that I experience during times when I lose dignity and become verbally abusive when upset. I genuinely am not proud of these moments and if I am making the effort with you to apologize, my hope is as, a professional, you will at a minimum try to acknowledge that not only am I “at my worst”, but I’m also in a position where my freedom and power has been stripped from me. The inpatient setting alone is abnormal and adapting to it can be a challenge for anyone. Often patients escalate as a result of responding to a system that is inherently dehumanizing, at times.
I feel so much needs to change regarding the structure of inpatient stays. So many of the patients need longer stays with additional services to truly stabilize. The current system is overwhelmed, rushed, and often the stay is too short to ensure a safe discharge. More time is needed to determine if the medication changes made are indeed actually effective. In the past, stays not only were longer, but the care was more individualized. I remember in the 1990s not only receiving a variety of physical and mental tests and assessments, but I also met a therapist 1-2 times a week. My recent hospital stays were too brief to actually ensure a correct diagnosis or to provide patient-centered care. Maybe it is too much to ask that a mental illness, be treated like a physical one? A holistic approach would benefit patients to ensure that there isn’t any other reason for their symptoms. I shudder to think about the accuracy rate of determining one’s diagnosis or the safety of the discharge when stays are often too short to truly know the patient’s needs. This causes unnecessary recidivism, but again I guess insurance companies prefer to take that “gamble”. Sadly, lives are lost doing so. And for many, who suffer for years without adequate care, their quality of life is greatly diminished. This can lead to poor outcomes for some such as incarceration, homelessness, or other health complications from lack of self-care.
My hope is that one day those who survey the hospitals to renew their accreditation involve a board of individuals who actually live with a mental illness who have been inpatient. Please consider our voices in the process. Many of us have ideas for how we wish to be treated and what we need for the experience to be better.
I will be the first to admit, I don’t always show my better side while in treatment. It is a demoralizing experience where as an independent, educated, and high functioning individual, I feel my rights are stripped from me. If I am unlucky, there might be a few staff members that can make the experience intolerable. I have experienced some truly effective and good providers in the mental health system and to those people, I am eternally grateful. But, the few “bad apples” can truly damage an individual who is already struggling, causing them to not ask for help again. That is why the quality of services matter so much to me. It can save a life. And it can enhance the quality of life for so many struggling.
Thanks again for taking the time to read my thoughts and concerns. It is just my perspective from the position of a patient being served in our current mental healthcare system.
With the current focus on mental health issues relating to the Coronavirus Pandemic, I feel this is an opportune time to have an honest and frank discussion regarding access to affordable and quality mental healthcare services in America. Those of us who have been struggling for years living with a mental illness, are all too familiar with the challenges of finding the help that we need to not only reach stability, but maintain it. Often the services and programs to support recovery are difficult to access and some are virtually non-existent or not affordable. Most of us with lived experience have managed to piecemeal our recovery efforts over time to sustain our recovery, but we are also aware that services and programs fall short to meet the needs of many and, as a result, some unfortunately do not ever recover.
One of the main triggers for my depression is the lack of concern for those living among us who are struggling with a mental illness and/or addiction issues that often leads to incarceration, disability, or homelessness. I am particularly sensitive to these issues because of my own life long struggle with mental illness. It is also distressing for me to see those living with addiction issues who experience homelessness or incarceration because I have loved ones who struggle with addiction and I am empathetic towards the issues surrounding the disease.
For the past two years, I have been living in Los Angeles and the level of homelessness here in the city is at epidemic proportions. It is disturbing, to me, to see so many living on the streets in such dismal and dire circumstances. While not all who are homeless struggle with issues of mental illness or addiction, many of them do. As a consumer of mental health services for nearly three decades, I know first hand how difficult treatment can be to access and how, often times, the quality of treatment is poor. Services rarely include the continuity of care that leads to and enables long term recovery. Too many people are slipping through the cracks and it becomes nearly impossible for these individuals to remain in recovery when society lacks the infrastructure needed to support those rebuilding their lives. Most who have never experienced accessing mental health services firsthand are unaware of how deeply fractured the system is and make judgments without having the lived experiences of attempting to do so. As an educated individual who is able to advocate for myself, I have often been appalled by the way I have been mistreated, and even defeated, at times, by the lack of services available that would support and facilitate my recovery.
Many services and programs are often laden with structural and attitudinal barriers that even the most skilled, experienced, and educated individual would have difficulty navigating. My hope in sharing my story is to demonstrate the complex interplay between the individual struggling and the programs and services that are sometimes unavailable or of poor quality. Many times people seeking help are dealing with not only the symptoms of their illness, but also the consequences of struggling for too long in a system that lacks the wrap around services to truly help them. They also may be experiencing shame and frustration from having people in their lives who lack the awareness of how difficult it is to access help, make the false assumption that they are “just not trying hard enough”. Many who do not suffer have the wrong impression that help is easily accessible and they unknowingly invalidate the individual struggling. Using my own struggle, I hope to bring awareness of how one individual over the course of many years might experience several damaging experiences and this can lead, over time, to mistrust and a hesitancy to reach out. I am fortunate to have a good therapist at the moment who validates my complex history which is unfortunately littered with many incidents where I “hit a wall” when attempting to access help. I hope the following resonates with some of those struggling and sheds light on how challenging it can be, at times, to access quality care. The difficulty of accessing quality medical care, the services and programs needed to enable recovery, and the protections meant to prevent disability discrimination can create a challenging and difficult road for an individual who is struggling to recover from a mental illness or addiction. Below, I discuss examples from my own life to help contextualize each of these struggles in hopes to spread awareness and cultivate empathy for those doing their best to access the needed treatment and services to heal.
Lack of access to quality medical care and treatment.This can present itself in a variety of ways. Here are some actual incidents that have occurred to me personally that not only were damaging, but caused a relapse in my symptoms of anxiety and depression. Beginning with the most severe and damaging incident causing a distrust in the system, to the least offensive causing a delay in access to care, the following are my own personal experiences as a an educated individual attempting to access quality care for the disorders I live with: Bipolar 1, PTSD, Somatic OCD, and ADHD.
Denied access to an inpatient care facility for crisis stabilization: I was once forced to leave inpatient care prematurely after only one day of receiving treatment. I had waited roughly 36 hours in the emergency room department to be assessed by a social worker and was later admitted to the inpatient psychiatric unit. Once admitted, I was able to sleep a few hours. I made the error of requesting to leave after feeling mistreated by one of the staff there. I immediately changed my mind and communicated my wishes to the staff as I knew deep down I needed the help and more than likely needed my medications adjusted. I also was waiting to receive a test that was ordered due to having breathing difficulties from a recent respiratory infection. The doctor there decided to discharge me, even though I was openly requesting help for the suicidal ideation that I was still experiencing. They forced me to leave treatment stating that if I did not leave, I would be ushered out of the inpatient unit by the hospital security. I was discharged with no medication change and the test that was ordered for my breathing difficulty was also not completed. This incident was probably the most damaging experience I have endured during all of my years of treatment for my mental health disorder. It not only placed me at increased vulnerability for a suicide attempt, but the hospital placed my physical health in jeopardy by not completing a test to determine why I was visibly having breathing issues.The incident was traumatizing and has made me not want to ever seek inpatient services again. I also felt powerless to do anything about the incident because I did not feel I would be believed. Other than to write a poor review of my experience on their Facebook page, I have taken no other actions and have moved my life forward.
Medical providers who have been unwilling to support workplace accommodations. I have had therapists or psychiatric providers who were unwilling to provide documentation to support my request of setting up accommodations in the workplace. This was particularly damaging because the delay caused by having to find a provider that would assist me in this way, lead to employers doubting that I had a disability that required accommodations. This also caused significant stress for me which only exacerbated my symptoms. Some providers are unwilling to assist in letters regarding unemployment claims or accommodations requests. This leaves the individual struggling with no real pathway to gain accommodations in the workplace unless one decides to change providers and this can take a lot of time.
Inability to afford or being waitlisted for needed healthcare services. I cannot count the amount of treatment opportunities (particularly recommended DBT classes) that were thwarted by lack of insurance or long waitlists. Many times I was willing and waiting for treatment to become available and the waitlist was either too long or it was too costly without my insurance providing payment.
Certain services that would be helpful are not covered by insurance companies. I was told over and over that residential care would be the most beneficial for me. And yet, my insurance through my workplace did not pay for this type of treatment. Plus, it would have been nearly impossible to get the time off of work required to complete the program. The cost was “out of reach” for me.
Denied access to needed treatment due to having to rely on Medicaid which often does not cover speciality care. While waiting on Medicare to “kick in” after being approved for disability insurance (SSDI), I was denied multiple needed treatments by Medicaid which caused my condition to worsen and my symptoms were exacerbated as a result. The process of waiting to receive access to quality care for both my physical and mental health for 2 years was a dehumanizing experience where I truly felt invisible and devalued. I was even suffering with a new medical condition that affected my swallowing whereby I had lost nearly 80 pounds in 6 months and I was denied multiple referrals to a gastroenterology specialty clinic. It was a terrifying experience to lose so much weight and not get the help I needed and it actually thwarted my initial plans to attempt working part-time. I was too sick and unable to get the care I needed through Medicaid. With Medicare in place now, I get the care I need and am grateful.
Lack of access to services/programs that facilitate recovery. Many of the program from housing, disability insurance, vocational rehabilitation, etc. are often inaccessible due to long waitlists or other factors. Below are some of my personal experiences trying to access these services and programs.
Being waitlisted for vocational rehabilitation services. When I lost employment due to being denied accommodations in the workplace, I immediately signed up for vocational rehabilitation services in the state of WA. I was approved for services, but waitlisted for nearly 3 years. By the time my name came up to be served, I had already moved out of the state with a friend in order to prevent homelessness. I consider myself lucky that I have people who have supported me when needed. Being in a state of vulnerability where I could not access the services to help me return to work, has made me more empathetic to those who do not have a “lifeline” and end up homeless.
The long wait time to be approved for social security disability benefits leaves the disabled more vulnerable to homelessness and loss of needed medical treatment. Waiting for disability insurance (SSDI) to be approved, was yet another dehumanizing experience that included many roadblocks that appear to be “set up” to deter people from gaining benefits. With determination and grit, I was able to get my benefits awarded in a little over a year. However, I know many more who wait 2 and 3 years and lose everything in the process while waiting.
Programs, like section 8 that helps low income adults afford housing, have long waitlists and are often difficult to access. I have attempted to learn about housing opportunities here in Los Angeles so that I can be independent again and begin working a part-time job. I was told by the Department of Mental Health and another social agency that in order to receive section 8 here in Los Angeles, I would need to be experiencing homelessness. I have placed a few more calls to request about other programs for low income individuals who are dependent on their disability insurance as their only means of income, but they have been very slow to get back to me. I realize I have to be persistent, but again not everyone struggling has my education level or access to the stability I have in housing to make contact in a consistent manner. They might not have access to reliable internet or a phone. Not everyone who is struggling is well enough to voice their needs and remain consistent in pursuing services.
Lack of protection when there is a denial of rights or services. Often when an individual living with a mental illness experiences discrimination in the workplace, a denial of treatment, or another abuse, it is too easy to discredit the individual as often the above can be difficult to “prove”. Many times people who struggle experience poor treatment or other damaging incidents, but they are unaware of their rights or even if they are aware, it is common due to the stigma that surrounds mental illness for a lawyer to decline representation to provide a remedy.
Workplace disability discrimination is more common than one might think and victims often are unaware of their rights or have difficulty gaining representation. I have experienced multiple incidents of workplace discrimination in the form of denied accommodations and even the refusal to engage in interactive discourse to facilitate the process of getting accommodations set up. This has lead to job loss, loss of housing, loss of health insurance, and ultimately a disruption in continuity of care. The entity where one can file a complaint of discrimination, the EEOC (Equal Employment Opportunity Commission), is often very slow to act. It took a year for them to investigate a claim of discrimination that I reported and I was already in another place of employment when the investigation began. The American with Disabilities Act (ADA) is the civil rights law that protects those living with a disability from discrimination in the workplace, however, it’s language is often not specific enough to provide true consequences for those engaging in discriminatory practices. More often than not, places of employment are able to escape the consequences of discrimination and this leaves the employee extremely vulnerable, having to pick up the pieces and move forward. Many people who experience discrimination in the workplace are fearful to defend themselves as they may need a descent reference or might wish to avoid other negative consequences of doing so.
There is little protection for those who experience mistreatment from a mental healthcare provider. One can file a grievance and I have, but I have never had anyone follow up with me. Lawyers are very hesitant to get involved because the stigma lends many to believe that those living with a mental illness may not be credible, particularly when in an inpatient setting. Obviously, reaching out to report can be re-traumatizing for the victim in and of itself, especially when the victim is not “believed”.
Many of my examples are more than likely relatable to so many living with a mental illness. And believe it or not, I have many more stories that I could share. These experiences compound upon one another, and, over time, truly “break” a person. It becomes harder to trust the system and more difficult to trust medical providers enough to open up again and risk being vulnerable in order to receive help.
Living through so many tough experiences, I feel compelled to speak out regarding these issues. Many times, people lack the compassion towards those struggling because they only are viewing the one incident that is being shown to them at a particular time. Life is complex and too often I see people minimizing an individual’s struggle because they are simplifying their experience by looking at only one incident. Living with a mental illness often comes with many layers of struggle from living with the stressors of income instability, job and relationship losses, and dealing with the shame that stigma causes for those struggling. All of this is in addition to managing the symptoms of their illness. More often than not, when someone is requesting help, they have been “kicked around” a bit in the system, told “No” a lot, and are truly trying. It is truly hard out there.
This begs the question: “Why do so many not care? Where is our humanity?” I view our world as the interplay between us, the environment, and the systems we create to support a healthy relationship between the two. When we have many homeless living on our streets, we have to ask ourselves, how healthy is our society? Perhaps, those struggling with mental illness are more aware of these issues because some are faced with these risks and this makes them more attuned to the struggle. It is just a thought. My experiences over time have truly cultivated empathy. It hurts to see so many living on the streets. I personally know how hard it is to access the few services that exist to help people and I’m aware that the care is not always of stellar quality. I am acutely aware that had I not had a support system in place, I, too, may be at risk for homelessness.
I also am aware that many who struggle with issues of addiction were raised in families where their parents struggled in similar ways. The system failed to serve them as children and now they are adults mirroring what they have learned. Our society often devalues those who are currently incapable of contributing. And yet, the infrastructure simply isn’t there to help people to contribute. I am educated, persistent, and able to advocate for my needs and it was still impossible, at times, for me to receive the help I needed. As a result, I ended up relapsing and now I even have other physical illnesses, such as fibromyalgia, IBS, and migraines, that I feel are a culmination of living with an illness for so long and never “catching a break”.
I know in my heart that we have enough resources, talent, and creativity to address the problems of mental health issues and addiction that are now both at epidemic proportions. I feel if I want to see change in my community that I have a personal responsibility to act and to voice my concerns. Perhaps, in doing so people will become more aware of the challenges in addressing these issues, as they are complex and multi-layered. Isn’t it time to truly tackle mental healthcare in a creative way that not only changes lives, but changes our community and world? I would wager a guess that most people who do not see the value in serious mental healthcare reform would feel that it is too costly. In reality, the cost of the programs and services created to help families and individuals in need would be more than paid for by the decrease in rates of incarceration, disability insurance, and other medical costs incurred by individuals requiring repeated care due to relapse, etc. Investing in those who are struggling and early intervention/prevention will provide for less dependence overall.
Many times I can hear in people’s tired voices, who indicate that they are depressed, that they don’t know how to put their struggle into words. That is is “too much”. I hope by articulating my struggle I have shaved off a bit of the “iceberg’ so to speak that keeps so many of us immobile. It is too much and we shouldn’t have to work so hard to receive the treatment and services we need to help us truly recover. Society has a responsibility to meet us half way. No one is an island and the more we work collectively to address these systemic issues, the healthier our entire society will be. Our wealth, power, and sense of community is only as strong as our most vulnerable members living within it. How we treat those struggling is the difference between a decaying society and one that is flourishing, truly “rich”, and healthy.
I have hope in humanity. We are resilient and innovative. I hope by sharing my own complicated struggles that some become aware of the different issues impacting many of us who are still paddling at the surface, treading water. Give us a hand, pull us to shore. Be willing to listen. Many of us are willing to share, work, and engage with you. The struggle of so many has been weighing heavy on my heart this year and this is hopefully just the beginning of my own role as an advocate.
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