An Open Letter To Those Treating My Mental Health Disorder

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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 sincerity,

A Mental Health Consumer

A Heavy Burden to Bear: When Lack of Access to Affordable and Quality Healthcare Compounds Complex Trauma

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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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The Novel Coronavirus and YOU: Let’s Spread LOVE

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It’s been only a few short weeks since I noticed a slight, then certain and sharp, “shift” in our mindset and optic. Two months ago, China’s outbreak seemed so distant to us. Somehow, we felt safe enough in our daily lives and routines to casually pass by or “tune out” the tragedy unfolding in what seemed, “worlds away”. For some of us, it captured our attention, but admittedly, it wasn’t necessarily on our daily phones or computer screens as it has become now, bookmarked, screen-shot, and often shared. In less than a month, we have become suspended in an unsafe and unstable space, collectively, turning to technology to connect us, to seek comfort, and to maintain some semblance of normalcy.

For me personally, I had just taken my first cruise on the Royal Princess to the Mexican Riviera just two short months ago in January. My ex-spouse and I, who both currently reside together in Los Angeles, joined his mom and sister, for a 7 day cruise, visiting three port cities. I certainly wasn’t thinking of a global pandemic then, as I milled about the ship, frequenting endless buffets, and betting into the wee hours in their casino. We crowded into elevators carrying over 20 people, easy: the old and young, with passengers representing all corners of the globe.

On the day of our return, mid-afternoon, Scott began to complain of not feeling well, we all assumed it might be the flu or a cold. I didn’t “shake or hug” his Mom or sister goodbye because they had spent time, earlier, closed up in a car, taking a scenic drive through Beverly Hills with him. I did not want to get sick. I had stayed home earlier, instead of joining them, because I was having “tummy troubles” and wanted to give Scott a few final hours to spend with his family before he dropped them off at the airport. Scott was fine earlier in the day when we disembarked from the ship, but when he came home from dropping them off at the airport, he headed straight to bed due to a fever so high that he later told me that he had hallucinated. His fever continued on and off for roughly three days and he developed a “barking” cough that he mentioned was not productive. I remember throwing him a pulse oximeter, keeping my distance, but wanting to make sure his oxygen levels weren’t dropping as he was coughing continually through the night. Although, he never complained of being “short of breath”, he did have high fevers, coughing, exhaustion, and towards the end, nausea and stomach issues. I  had stomach stuff on the day that we returned, but never came down with a fever or a cough. I remember feeling tired and “under the weather”, but nothing more. I had immediately implemented really strong “infection control” measures in the house, wiping everything down for about a week. Scott was never tested for the flu, and the virus had “not reached us yet”, but the symptoms he had resemble those of the new novel virus that we are facing today: Covid-19. Both his Mom and sister returned to TN and were sick with the same symptoms and, after it hanging on for awhile, it finally passed and they both recovered. His mother hung onto her cough for a long time. We all now wonder if we have in some way already experienced Covid-19, personally, in our lives. I guess, in time, they will be able to test people for exposure to see if the antibody is present in their blood. I have seen a lot of other posts from others on social media posing similar questions from an illness they had back in December or January. Could it be, this has been spreading for awhile now? So many unanswered questions.

In any case, so here we are, with many of us suspended in a state of uncertainty that is unsettling to most. There are always those who are young or who are not that concerned, but for most of us who have been watching the devastating scene play out in Italy, let’s face it, we are scared. I know that I am. I already live with C-PTSD, OCD, Bipolar 1, and anxiety/depression. The first few days of this were so surreal to me, I nearly thought that a recent medication change had brought on a delusional state. I had to ground myself by talking to others and reassure myself by again looking at social media and trusted news sources. Although, I can recall being briefed on a global pandemic back in the early 2000’s while working in healthcare, I had conveniently stuffed that scary possibility way back into the dark recesses of my mind. And now, as predicted long ago, here we are.

As most, I am feeling anxious and exhausted, concerned about the coming tough days ahead of us. My anxiety and body tension, as well as OCD, has escalated to the point that there have been moments I’ve had a tightened chest, body aches, and compulsions of checking my temperature. I try to take breaks from the news because my body tenses with the visual and auditory component as I easily absorb other people’s fear, sadness, and anxiety. Reading the news is easier than watching it or hearing it, for me. The sense of urgency and concern in people’s voices activates my PTSD and I want to “sound the alarms” and warn others of the inevitable reality that I feel will more than likely enfold over the coming days. Scott and I have just moved to the Los Angeles area and the news often makes me feel like “fleeing” the area as I feel the high density of people will mean an overburdened healthcare system and a deterioration of our “frontline” of responders and resources, all of which may lead to upended chaos in the city, even outbreaks of violence, I fear. Admittedly, I tend to catastrophize events and thus I am no stranger to the unsettling feeling of being upended by fear and panic. There have been many times that I have even tried to convince Scott that we should leave the area. I am hoping it doesn’t get “that bad”, but I am new to the area and we have no support here. It’s very hard, and at times, it terrifies me. We shall see what the coming days bring.

A crisis of this magnitude, surely brings us face to face with our own inevitable mortality, reminding us that our time here is brief and fleeting. We often hear that we should “live for today” and “cherish the moment” and yet it’s human nature to get easily distracted, wrapped up in our humanity of, sometimes, selfish behaviors that distance us from one another and even ourselves. Something as jarring and paralyzing as a global pandemic, has the potential to ground and connect us to the essence of life: connection to ourselves and to one another. In a very basic sense, we need one another. Right now, we need one another to practice “social distancing” so that we can “flatten the curve” sooner than later, slow the rate of infection, and allow the medical community to “catch up” and work to solve this global crisis. We’d like to think we are “alone”, but we are truly interdependent and the more of us that recognize that fact, the more successful we will be at lowering deaths and returning to a new normal. Hopefully a normal that is better in that we will be more “in tune” with the fact that we do all occupy the same space, planet earth, and we can collectively: “make a difference”.

People are dying and more will die from this epidemic, but we can slow the rate of death if we work together. Humanity, at its best, can be nearly miraculous! The capacity for humans to create and sustain order in the midst of what seems “chaotic”, demonstrates our collective power and potential. We honestly can change the course by adopting a “we” mentality, over a “me” one. The innovation that stems from humanity’s desire to survive and thrive knows no bounds. We are miraculous, beautiful, and amazing in our collective pursuit to persevere and protect LIFE. Take a moment right now to acknowledge the vast amount of newly acquired knowledge and routine that is being called on to preserve human life, the greatest gift we have. SIT, in the stillness that exists within yourself and draw upon the centuries of humanity that has given us so many gifts of art, music, architecture, science, etc. that which inspires us to celebrate the energy that resides within us. This love and need for love knows no bounds. We were born to care and to connect.

And so, when the fear and uncertainty of today leads you to paralysis, draw upon the life that exists within us, between us, outside of us, around us. Take a deep breath and acknowledge that humanity has always been challenged. It has always been a struggle and hard. Life has always included death and birth. Life is continual energy. If you don’t believe this, open your window for a day and listen to the energy “buzzing” that is created by humanity and the diverse biosphere that surrounds us, always. We are life. We are love. We are peace. We are the stillness that we seek. We are the comfort that shelters us. OUR potential is limitless and OUR energy boundless. And it exists in the present moment. None of us have ever known when our last breath might be. A global pandemic pulls us up and forces us to take notice, but the final destiny was predetermined as each life only takes so many breaths. We breathe in the same air, often unaware of it’s weightlessness and freedom. We take for granted ourselves and each other. That is part of the human experience and our imperfection. But, we have an opportunity to be renewed and awakened by this experience. We have a chance to act responsibly and save lives while doing so. These thoughts and longings to wake up and connect have always been there, perhaps this is mother earth’s way of nudging us.

I will tarry forward through the next few weeks and coming months in an uncertain haze. I will be fearful, and, at times, I will be brave. I’m praying for all of us to get through this and to come out on the other side of it changed for the better. It’s my hope anyway.

Stay safe, my friends. Stay healthy. And if the darkness comes, do not forget the light. This too shall pass. Love, comfort, and light to all.

I am love.

I am light.

I am peace.

I believe what we tell ourselves has the potential to expand in our lives, exponentially. Let’s spread LOVE.

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Crazy Making in America: A Desperate Cry to Change Our Broken System

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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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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 Don’t Really Want to Die, But…

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I don’t really want to die, But…

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. 

“We shall overcome”

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Mental Healthcare Madness: A Sick System

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I am listless.

I am tired.

I wish there was someone I could talk to who was able to listen objectively, with empathy.

I wish I was able to afford a reputable residential treatment for my illnesses of: Bipolar I, ADHD, and PTSD. I am exhausted fighting all alone. I am only able to meet twice a month with my therapist because I am on Medicaid. It is not enough with everything that has happened over the last year. I need help managing my anger related to family issues and an abusive relationship. The longer I go without treatment, the more devastating it becomes for me. I am unable to work currently because of how sick I have been. My negative coping patterns become reinforced and I feel more alienated and depressed. Often, I am suicidal. And, my physical health is suffering greatly as a result. I have reached out to the crisis hotline a few times over this past year, but being placed in an inpatient facility for acute care and destabilization isn’t appropriate for me and often does more damage than good.

The last place I went to for crisis destabilization, I waited 36 hours to be admitted and was kicked out the same day I arrived.  I was manic and exhausted and impulsively  asked to leave. I quickly changed my mind, but was forced to leave anyhow even though they had not even completed the tests they ordered regarding my lungs.  I was having trouble breathing due to recent influenza that led to bronchitis. I informed several staff members of my decision to stay and receive treatment, and even asked to talk with the doctor who was there at the time of my requests. No one provided with with an answer and then later they dropped my clothes on the floor in front of me and told me I had to leave. I was still wearing a blue suit I was made to wear while on precautions for 36 hours. I told the staff again I was still suicidal, they responded by informing me that if I did not leave willingly, they would involve hospital security to escort me out. I was lead to the exit, provided my belongings in which they had rummaged through and placed in plastic bags, and was shown the door all while I vocalized that I was still suicidal. It was an extremely undignified and dehumanizing experience for me. I thought to myself later how incredibly odd it would have looked had I thrown a big scene vocally while security ushered me from the psych unit of the hospital. Instead, I left quietly, in tears, and immediately went to the administrative offices and complained. No remedy was reached and I left in tears, defeated. It was truly a devastating experience for me. It has discouraged me from ever wanting to get help when I am depressed and suicidal.

Also recently, I nearly attended residential treatment, but backed out at the last minute because they were communicating inconsistently with my mother and me concerning cost.  It was expensive, around $18,000 for 3 weeks, and I was already feeling uncomfortable about having my Mom fork over that much money. My Mom was reassured by the treatment facility that if I had to leave early, she would be reimbursed. However, the following day, I was asked to sign a document stating the exact opposite, that I would not receive any type of reimbursement should I leave the program at any time. I began to get cold feet after reading some on-line reviews. When I withdrew, it took more than a month to get back the $12,000 deposit my mother had paid. We had placed several calls, but were being ignored which caused both my mother and me anxiety. It was only after I wrote a nasty review on-line that they attempted taking down, that they returned our money. This facility, which was Christian-based, lied stating my review of their treatment facility was for another organization across the country. It was odd behavior, and again has made it difficult to trust others in receiving treatment.

And thus, I am on the waiting list, here locally, for an outpatient Dialectical Behavior Therapy (DBT) program that seems promising. However, the waitlist is still a few months out and I have been on it for about 3 months now. I also do not have the money to afford treatment, but have been referred to a grant that may cover most, if not all, of the treatment if I am awarded it. I am cautiously optimistic. We’ll see.

I wanted to write this post to demonstrate the potential difficulty one may experience in  receiving adequate treatment for a mental illness in America.  If you are residing in the United States and attempting to receive adequate care, it can be extremely difficult. And, you are not alone.

My niece was declined inpatient care by Medicaid a year ago for depression, anxiety, PTSD, and substance abuse issues. Since then, she has had multiple arrests and hospitalizations. Both the social worker and presiding emergency room MD felt she would benefit from inpatient and admitted her pending insurance approval, the hospital sent her home at 3 AM via cab to my house due to a denial from Medicaid. It was shocking. Had she not been denied treatment, she may not be as sick as she is today. Her diagnosis now is schizophrenia & bipolar disorder, which may actually be drug induced psychosis. Early aggressive treatment may have not only drastically improved the quality of her life, it could have also saved the government money from subsequent hospitalizations, incarcerations, and arrests.

My nephew was brought to the ER with hallucinations and delusions by the police a few years ago. They discharged him to the streets with a note in hand instructing him to contact his primary care physician for follow up care. He began walking home and eventually was able to call someone to come and pick him up. He has bounced in and out of hospitals without any true progress. He resides in Tennessee and they do not have any state hospitals where he can stay longer to hopefully experience stability. Instead of  having one longer stay that attempts different medications and non-medical interventions, he is hospitalized roughly 6-8 times a year briefly only to be medicated and released. It is heartbreaking to watch my nephew suffer year after year and not get well. I truly feel the system is failing him and this is the only life he has!

This is why I write and continue to fight. I realize that there are many people out there struggling, like me. They have also have had bad experiences, causing hesitancy and distrust. I have met many professionals along my journey who are frustrated too, longing to do more, but have their hands tied behind their backs. I hope writing this helps others struggling not feel so alone. I also hope that these stories stay alive to inspire professionals and policy makers to push for reform that will provide more effective treatment. Mental illness is debilitating and can be deadly, it is time that we demand care that is compassionate, effective, and affordable.  Thanks for reading.

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