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.

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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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