Guns and the Mentally Ill: How Scapegoating is Increasing Stigma

 

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Dear American Public,

As an individual who has suffered for over two decades with Bipolar 1, I share with you the same outrage and heartache you more than likely experience when learning about another incidence of gun violence in our country. I cannot imagine the deep despair and sadness that comes with losing a loved one in such a senseless tragedy. Gun violence strips away our sense of security and is another issue that divides our country.

As we struggle to understand the root causes of gun violence, many Americans are pointing fingers at people like “me”, the mentally ill. Given that most of the mentally ill are not violent and are more likely to be victims of crime, I grow weary of the stigma that grows with each passing incident. It looks like, to me, the mentally ill have become “the scapegoat” of the gun violence debate. It’s convenient to state that the mentally ill are the problem, after all, the stigma alone perpetuates fear and misunderstanding and encourages the public to doubt the credibility and stability of the mentally ill. The mentally ill are a largely misunderstood population and often those who suffer do so silently.

Ironically, the same individuals scapegoating the mentally ill as “dangerous and violent”, are the same who wish to cut funding to programs like SSDI (disability insurance), vocational rehabilitation and other programs that benefit the mentally ill. Discrimination in the workplace is common for those who struggle and as a result employment is often difficult to maintain. The government over the years has done little to decrease discriminatory practices in the workplace and the Equal Employment Opportunity Commission (EEOC) is often very slow to act, its power is limited. If the public is fearful that the “mentally ill” are violent, the government actually does very little to intervene and instead often places individuals who are struggling in very desperate situations. The point being that the mentally ill are literally pushed to their breaking point with a government that is so slow to act when providing assistance. This puts the survival of many who struggle in constant jeopardy. This is evidence again that the mentally ill do not resort to violence despite the lack of assistance and treatment available and that many are victims of violence and discrimination.  There is absolutely no safety net for the persistent and severe mentally ill in our country. And yet, even with the constant struggle of living with a mental illness, most hold themselves or are held by others through difficult and trying times.

On a personal note, last year I lost my job as a Social Worker with the State of WA, DSHS. I was fired after a medical leave at the first meeting established to put accommodations in place. I was told at this meeting that I was disqualified due to my disability of Bipolar 1 and was granted no accommodations. As a result of losing my job (and other jobs related to my illness), I relapsed and have not been able to work this past year. I attempted to get on to Vocational Rehabilitation Services and was waitlisted indefinitely. I applied for SSDI and am still involved in the appeals process which has already taken nearly a year and I have received no benefits as of yet. I was told it could take another year and a half to get a hearing. If I did not have a friend to live with who was willing and able to help me, I would have lost everything by now. I would be homeless. I only have a small Aging, Blind, and Disabled monthly cash benefit of $197 and food stamps that keep me afloat currently.

I am writing this to share with you the bleak reality of many mentally ill people. My survival and livelihood was attacked by the discriminatory practices of the State of WA, DSHS, and I was denied access to employment as a result. The lack of assistance by government programs that were developed to help people in my situation have initially been denied or waitlisted. This has placed extreme stress on me when I am already struggling with a severe and persistent mental illness.  If I didn’t have the same upbringing or education as I thankfully did, perhaps I might have turned “violent” due to the strain this all has caused me. The point being that the mentally ill often are put in very stressful situations that are often caused by the stigma surrounding mental illness, and yet, we usually do not “break”. I know, in time, even with my illness, I will be back on my own two feet, contributing to society and hopefully being a benefit to others. I have always enjoyed helping others, NOT harming them.

I believe mental illness can play a role in those committing crimes that are violence, but there are other factors that create the psychological makeup of someone who would commit an atrocious act on that level. It is not stemming from mental illness alone. Often the individuals who are planning violent attacks are not going to seek treatment. Therefore, tighter regulations where access to guns is difficult to obtain might be our only hope to prevent some of these incidents of gun violence.

In the end, bringing light to the issues surrounding the mentally ill is not a bad thing. I agree that we need a better system where individuals struggling have easy access to quality treatment that is affordable. There also needs to be short term disability to prevent homelessness and immediate access to vocational rehabilitation programs that provide training to ensure employment is successful. We currently have a disability insurance program that can often take up to 2-3 years to begin receiving benefits.  Putting the mentally ill under that level of stress where some are forced to the streets can cause anyone depression and despair. It is unacceptable treatment towards a population that suffers to no fault of their own. Could it cause certain people to be pushed over the edge? I don’t know. I only know that as a person with a mental illness I have, at times,  been pushed to the edge, but have never once physically attacked anyone.

The mentally ill have become the scapegoat for the issue of gun violence. If you are going to scapegoat the mentally ill, at least address the issues that might push them over the edge in the first place. I personally see gun violence as an issue of easy access to guns that is continually fueled by a society that has become more and more detached and less connected. I also feel that the economic disparity in our country and the increase in hate speech in social media is also a problem. Gun violence is a complicated issue and should be tackled as such. There is no easy and simple fix. It will take time, effort, and commitment to decrease gun violence in our country.

I truly hope we can work together to begin making progress in the area of gun reform. It doesn’t have to be this way. We can change, we just have to believe we can.

A concerned citizen (who happens to live with a mental illness),

Amy

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Silenced Stories of Our Struggle

 

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There is an unshared story that is told over and over to my tear-stained sheets on so many restless and sleepless nights. It’s a story that I feel others don’t want to hear. A story that is told in angry, broken phrases, and through desperate behaviors that has isolated me, at times, from those I love. This story is multi-layered and complex. There is so much exposition surrounding the plot, that themes go undiscovered and I wind up feeling frustrated, bewildered, and alone.
I’d like to share some of the re-occuring themes in the story of my life. So much of my story is touched by the mental illness I have struggled with for nearly three decades now. My illness does not define me, and yet, it has impacted nearly every area of my life. As with any major disease, mental illness deserves the respect and attention needed to aggressively pursue adequate treatment and support. Often due to it being highly stigmatized and misunderstood, many people dismiss and downplay the struggle. I’m writing to articulate, as best as I can, the untold struggle that surrounds mental illness. The following comes from my personal experiences living with a mental illness.

Common themes relating to my struggle with mental illness:
1. The struggle of identity, Is it the illness or me? Many disorders can cause mood fluctuations and perceptual distortions. When you are younger, you are continually developing your identity and learning about yourself. For those that struggle, you have an additional burden to bear during that process. If you cycle, like me, it can be difficult to separate two competing realities: one when stable and the other when in an episode of depression or mania.

It took me many years to recognize that my illness was not integrated into my identity. Often mania or deep depression derails me and various behaviors surface as a way to cope as effectively as possible. Things were further complicated by others in my life who responded harshly to various behaviors that would surface due to my illness. Because mental illness is often observed through behavior, others will attribute the symptoms of the illness as personality characteristics. How others perceive you is continually mirrored back to you and it can cause you to embrace your symptoms as your personality. It’s safe to say without having a mental illness that continually causes shifts in mood and perception, personality development occurs in a relatively normal fashion absent episodes that can color one’s perception of reality. That is not the case for many who struggle. Often, I have behaved in damaging ways and later realized I was symptomatic at the time. I later asked: “Was that really me?” I have concluded after years of struggling, that the essence of who I am exists absent my illness.

I am responsible for managing my illness as best as I can, but during times of decompensation I wish people would cut me some slack as it is not something I can control. The behavior that is displayed when episodic is not my personality, but a result of the symptoms of my disorder. Just as the expression of my illness is confusing for others, it is equally disorienting for me. There is a lot of unnecessary shame associated with episodically losing control of your perceptions and mood.
2. Dealing with continual lack of validation: When you have a visible illness or disability, people are more empathetic. The problem with having a silent and invisible illness is that people are not able to see the struggle so they downplay it. If there is one thing those suffering understand, it is the lack of others validating and offering support during the tough times you experience with your illness. I often wished that the mentally ill would be cheered on like those with physical disabilities. It would just feel nice to have others recognize how hard it is to accomplish certain things when you are experiencing an episode. It’s comical that some people feel having a mental illness is a ploy for attention or special treatment. Mental illness is still highly stigmatized and no one shops around for a mental health diagnosis to garner attention. It’s not an illness that attracts attention or support from others, in fact, it often pushes people away.  Having a mental illness can be isolating.
3. To disclose or not to disclose, that is the question: Those who suffer with a mental illness, are continually presented with multiple opportunities to disclose or conceal their diagnosis. Most of us struggling are aware that disclosing our illness can bring unfavorable outcomes. People often lack the sensitivity and awareness to handle our disclosure in a positive and supportive manner. Disclosing a mental illness in the workplace can be damaging, although sometimes is necessary to request accommodations during times of decompensation. Even close friends and family will often struggle as to how to support someone suffering during an episode. Those who have never struggled often unintentionally say the wrong thing when trying to be helpful. Holding it in and hiding a diagnosis can be difficult and exhausting as well. The older I get, the more I realize how important it is to surround myself with people that are understanding and supportive. It’s a true act of self-care.
4. Having a mental illness, often means grieving missed opportunities in life. Due to my illness, I decided not to have children. I have also missed opportunities to land promotions or take a better job because I was actively struggling with my illness. I did not feel I could manage the stress of learning and adjusting to a new position at the time. I also feel had I not been sick during my college years, I would have been able to pursue a more competitive field. There have chunks of my life where I lost time and opportunities due to being in the grips of a severe mental illness. Days lost to anxiety and rumination, unable to truly relax and enjoy life. I have spent time grieving what I lost as a result of being so sick. So many times, I have expressed my longing for freedom, security, and safety. My illness has taken a lot of my time and energy. I don’t feel those who do not struggle understand that grief is another layer of having a mental illness. Grief includes bargaining, depression, and anger and the outward expression of these things are sometimes what others are responding to instead of the illness itself. There are layers of frustration, hurt, and disappointment that must be resolved when you live with a severe and persistent mental illness.
5. Living with a mental illness, sometimes means not being able to “let go” or detach from it. I’ve had many heated arguments with friends and family over my inability to “let go” when in an episode. People who do not suffer will often make the mistake of insisting that you can easily turn on or off a mood or perception. I have explained that if that were the case, I would not have the diagnosis of a mental illness. If I could change my state of depression or mania when in an episode that easily, I most definitely would. Remaining in a mood state and obsessing or behaving erratically does absolutely nothing to benefit me. While I’m doing the best I can to manage a chemical imbalance in the brain, I don’t need the additional stress of others demanding me to “stop it” or “let it go”. That approach often escalates an already explosive situation. If I could change course immediately when in choppy waters, I would! There is already so much shame associated with the inability to control certain unwanted thoughts and behavior that receiving criticism during these times only adds fuel to the fire. It’s better to validate and reassure than to scold and abandon. The real space for creating lasting change is done during times of less intensity where coping techniques can be learned. Some disorders do not have a cure and learning to manage the symptoms is the best approach in the end. Enlisting supportive people in your life can sometimes make the greatest difference in your process of recovery.

6. Invalidation and insults abound in media regarding the stigma of mental illness. If you struggle, it’s difficult to not feel bombarded daily by others on social media, television, and surprisingly even in support groups. When you have a mental illness, you start to see all the negative slurs and insults that exists in social media relating to mental illness. Every time there is an episode of gun violence, thousands point their fingers and cast blame on the “mentally ill”, reinforcing the stereotype that the mentally ill are “dangerous, unpredictable, and scary”. This is damaging for many reasons, but one is that it discourages people from wanting to get help because they don’t want to be labeled as “crazy or dangerous”. It paints an inaccurate depiction of mental illness and denies the reality that most of the mentally ill are not dangerous, but are more likely to be a victim instead. Social media,and even support groups for people struggling with Bipolar disorder, are often full of negative remarks that depict people who suffer as “hell to live with, evil, abusive, etc.”. I find many of these comments disheartening and damaging to those living with the disorder. Abuse should never be tolerated, but those who have suffered with abuse would be better off gaining support from a secured site as it is insensitive to those living with the disorder.
I could probably think of more layers that intensify the symptoms of having a mental illness. It is a true struggle that no individual would ever ask for or desire. Often a mental illness will rob you of time, energy, and relationships. It is very devastating in the end.
I wrote this piece to provide a true depiction of the layers surrounding mental illness. I am an advocate for early and aggressive intervention and treatment for those suffering. I believe education and awareness of these issues will help those suffering feel less alienated as people will be more accepting and accommodating if they understand the struggle. I long for the time when the mentally ill are embraced in society and in the workplace. Those who are more severe will also hopefully be invested in and given the opportunity to work and engage in social events if they choose. I will continue to use my voice as a agent of change in a world that is lagging behind on issues concerning the mentally ill. There is a lot of work to be done!

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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I Will Rise, I Will Love

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I am again in the midst of leaving and letting go. This act of self-love has left me captivated in thought.  Much of what I was clinging to throughout the years and wearing in heavy layers, is shedding, leaving me unraveled, naked, and new. I would have never guessed that the process of healing would leave me in a space of solitude, and yet somehow embracing it. It’s strangely odd and yet liberating at the same time.

I have often wondered if those in my life have realized that this imperfect process of anger, and even rage, is my voice growing in relevance and determination. I believe it to be lost on most of them in their continual defenses of behavior that has been damaging to me and others that I love. People become trapped by their own trauma and are often unaware that their behaviors and words communicate strongly that they do not believe you, hear you, or value you. People forget that action is truly the only litmus test for revealing someone’s true beliefs and intentions. And often, people do not act.

I spent a lifetime living in fear, paralyzed by the unpredictability of an adult who lived in the home who exploded often in anger and rage. I was only a child and was unable to escape from the situation. I recall living in a hyper-vigilant state, unable to breathe, always on guard. My small voice wavered as I reached out with courage to 2 adults in my life. I was quickly invalidated and told in so many words not to trust my own instincts and perception of reality. All of me wanted to be out of this situation and be safe. Years later, I was again invalidated by people refusing to accept accountability, and instead offering excuses that these erratic and explosive acts that I endured as a child, were never witnessed, but occurred when they were away from the home. There was an apology issued, but they didn’t express complete accountability, dismissing themselves from addressing the behaviors at the time because they weren’t really there to see them. Again, an indicator that perhaps what I experienced was fabricated somehow or less serious.

And so, I remained vigilant and ever ready to protect myself as best as possible and I often disassociated as a result. I remember times during these explosive situations that I disappeared. I recall the beginning of the event and the individual reaching to shake me, and then I recall nothing. I had faded into empty spaces, protecting myself from the assault, not only physically, but spiritually as well. I was broken and silenced as a result and did not feel protected or safe. This communicated to me on a deep level that I was not worthy to be protected by the adults in my life.

As a result of the ongoing tense and uncertain environment, I grew paranoid, depressed, and fearful. It has had a lasting impact on my life. For years, I felt expressing anger would kill me and even now when angry I feel unable to breathe. As I write now, I am severely anxious and tearful. My expression of anger now comes at a high cost. It is often explosive and leaves me feeling exhausted and anxious. I am still learning how to safely express it.

Years have passed with mental health diagnoses and medications and I’m still searching for the part of me that disappeared. I fight tooth and nail with family members regarding an addiction that has fostered loose boundaries and trauma of another sort. Deep neglect has not only destroyed the potential found in early adulthood of those I dearly love, but it’s limited their ability to have boundaries. It’s crippled their confidence to execute independently and as a result some do not have an education or a job. When asked, they are unable to articulate goals for themselves and are often absorbed in desperate activities to numb the pain stemming from their trauma. Restless and unable to often act, they engage with others who are on the same destructive path.

I often see the same patterns of enabling destructive behaviors and an throwing money at the situation which does nothing to address the underlying issues that are perpetuating the devastation. I see some of them being invalidated much like I was as a child, their voices downed out by the guilt of those not awake enough to accept accountability and truly address the trauma they endured as children. Adults in their lives that have kept them bound to inaction with behaviors of enabling and their own addictions, whether it be food, drugs, gambling, sex, etc. I do sporadically see efforts to remedy things, but these efforts are often coupled with enabling. I recognize the complexity of things, still yet, people turn away from each other, instead of towards each other in accountability and compromise. The guilt and shame associated with their mistakes impedes healthy patterns of reinforcing consequences and having expectations. This may eliminate some of the guilt, but does little to address the root problem which is the only way to truly heal and recover. The cycle continues. And not only is it heart breaking to watch, it has prevented me from connecting to my family in a normal and healthy way. It’s too hard for me to watch the pain and not address it.

I have fought alone for the past few years with no one really joining in and I’m exhausted. I recognize my own mistake of staying engaged and working harder than those who are struggling with their addictions. Often, I have been ignored and devalued by the ones I love and this results in nasty rage with abusive words. These words, expressed in anger, are what they continue to focus on instead of their destructive path. They easily forget thatI have reached out multiple times in kindness, offering support and help.

Engaging with members of my family is a continual and complete reenactment of past abuse. I am often ignored and abandoned, and my concerns are downplayed with no action taken. Many times I am told, in so many words, that I am not seeing things correctly.  People become defensive and my credibility and intentions are questioned over and over. I end up feeling devalued and misunderstood. I have walked away many times and no one knocks on my door, worried and concerned. And when I return, people expect me to nearly deny my reality and erase the past history in order to dwell in their complacency and avoidance of the issues. It’s a continual bleed that no one wants to acknowledge or treat. I am tirelessly running around alerting people of the grave injury that needs immediate attention and treatment while others ignore, flee the scene, or argue with me that treatment is not really needed. Exhausting, really.

I wonder sometimes if they realize my rage and even abusive words is my bloody, messy process of carving out my self esteem? The voice of the child that sat frozen in fear for years has shattered into a million pieces and is finally tasting freedom and self worth. Of course, I am angry. What has broken them and muted their voice, has also broken me. And yet we turn away in our pain, instead of towards one another to heal. Historical patterns I will one day be free of because they serve no purpose.  They have no space in my life. These pattens have paralyzed me and my family and are no longer effective. I am in the awkward process of letting everyone know that I am awake. My voice is strong and clear. And I’m shedding the shackles that I’ve lugged around for years.

The initial softened words that my voice shared were tolerated. But the sharper ones, full of piercing frustration, are deafened by those still clinging to the familial fabric that has been created and perpetuated by the abuse and trauma that we all experienced at one time or another. Your voices have often faded into addiction and complacency, too fearful to rock the boat.  Rocking it might mean getting truly messy and feeling too much. I get it.

I hurt physically. I am fearful, letting the waves of grief crash into me. And, yet I am relentless in my resolve to heal.

I will rise. I will love.

I have screamed enough, often becoming ineffective in delivery as my newly freed voice was clumsy in delivery due to years of hurt and anger bound by silence. I bounced around from being appropriate to being purely abusive and was awkward and uncertain. Shouting at those hurting who are hidden behind their active addictions that erode their lives and potential. I don’t want you to disappear and I’ve been tirelessly banging on your door, if only you could see me and sit with me. I have a lot to share. I know it’s not time and fear it may never be time. I have to let go in self love to become stronger. I can’t hang around watching the devastation when no one hears my cries, it re-traumatizes me. I am right back there being shaken with no one listening, validating, or caring to protect my spirit. I am strong enough now to protect myself and can leave what is hurting me. I pray all of you find your strength.

Many times people get stuck in roles: older siblings, parents, etc. I’m eager to break these molds and discover common experiences between my family members. I implore parents to release their adult children, realizing their uniqueness. Children pass through us and never truly belong to us. Often these familial connections become so enmeshed we can no longer be effective with setting boundaries because we see them as extensions of ourselves. Their realities are completely separate from the one we hold in our minds that only belongs to us on a personal level. Age and order has absolutely no relavance on maturity and spiritual growth. It is the work you are willing to do on your spirit that defines you. It is a personal journey in the end. However, clinging too tightly and enabling will keep children tide up in the story of their parents, instead of creating their own story. Having expectations is crucial in developing esteem and growth. Pain is a necessary part of life that no one can be sheltered from and the sooner a person learns how to cope with pain, the quicker they will not only be more self-sufficient, but will have a richer life. People are free when they step away with their own separate story of what took place and honor their own reality.

I’m getting help in unpacking all of this and moving forward in my life. I’m disengaging from the heaviness to learn how to engage more effectively while honoring myself in the process.

And I will rise. I will love. I see so much of the cycle and I long for others to find their voice and be free. I remain in solitude in this space, filling my spirit with self-love and validation.

I will rise. I will love. The time is now and I will aggressively pursue my health, even if alone. In this beautiful place of solitude, I will cultivate MY voice and MY strength. And I am so grateful today my voice has been found. It is a hard lonely road at times that people often do not understand, but one worth traveling.

Lighthouse List: My Guide Through Stormy Seas

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I’ve been on an endless quest of forgiveness and self love. I keep getting tripped by various events that suck me into old habits and patterns. I reach clarity only to be pulled back into the fog where I am wounded, raging, and ruminating. To be fair, I am navigating some fairly choppy waters at the moment. The boat is rocking like mad and I have become paralyzed, at times, or am frantically fighting, completely entangled and entrapped.

Initially, I start off swinging, hurling insults here and there, mostly screaming into wide, empty spaces. I have every reason to be hurt and even fearful, but I keep asking myself: “What happen to my promise to disengage?” This on going struggle has been nearly impossible to completely let go of because it involves family members that I love, but continually lose. I’m on an emotional rollercoaster of peaks and valleys that include: hope, rage, self-loathing, forgiveness, despair, anxiety, fear, and loneliness. I would give anything for everyone involved to abandon the rollercoaster and never ride it again.  God, I am tired.

After all the mistakes I have made again, I have decided to write a list here to remind me what to do and not do in crisis. Writing may help me navigate more safely through the next storm, a Lighthouse List to guide me.

My Lighthouse List

  1. Do not stop breathing. Seems easy enough, right? I stopped breathing earlier today and now I am having anxiety and panic which make it even more challenging to focus and respond. Do not stop breathing, remember to take a time out to breath and focus. You will be more effective as a result of doing so.
  2. Stop and ask these three questions before getting involved. Am I in an emotional state? Is it my responsibility? If I do act, is it realistic for me to expect that it will yield a favorable result? For the record, I have never once stopped to ask these questions and I believe if I had they may have allowed me to be more skillful.
  3. If in an emotional state, do something active before responding. I tend to be a highly impulsive individual due to ADHD and Bipolar 1. I cannot count the amount of times I have gone overboard in a rage, when angry, and regretted it later. It has caused a lot of self-loathing. Often the anger is justified, the response is not. I am going to try the next time I am truly triggered to immediately engage in physical activity of some sort in order to decrease the intensity of my emotions.
  4. If it is not my responsibility to act, step back until advice or help is solicited. This can be complex, at times, given the circumstances. But, in general if you are not the one responsible for remedying the situation, then it is best distance yourself. Provide some help and advice if you like provided they are open to receiving it, but keep your distance unless it is requested. This sounds like common sense, but in a crisis, situations emerge that often challenge this reasoning. Emotions are running high making it difficult to execute logically. I believe having this reminder will help in various situations.
  5. If you are uncertain that your actions will yield a desired outcome, wait to act until you are more certain. I think this is a good strategy to have when deciding wether or not to act in a crisis situation. There are times I am so fearful or angry I react without weighing the pros and cons of my actions. Keeping the end result in mind will help me navigate more safely.
  6. Take time out to recharge and take care of you. Even in the midst of a very difficult family situation, try to take some time out for yourself to center. Take a bath (you have to anyway!) or a walk and during those times try and take a time out to give yourself a rest from the chaos and emotional upheaval.
  7. Be mindful and remain in the present moment. Often crisis and trauma will bring us right back into the past and feelings will flood and overwhelm you, making it difficult to act in logical ways. Find time to center yourself and remain grounded in the present as to not bring past habits into the situation at hand.

This is a good list to start with as I navigate the choppy seas over the next few weeks.  Maybe I can do better from this point forward. The last few years have been extremely difficult and I have reason to be upset and even devastated. I am going to be starting Dialectical Behavioral Therapy soon and am excited to learn new ways to manage my emotional state and behavior in times of crisis. Until then, I continue to learn from my mistakes and use the above list. I am hopeful that the worst is behind me as I have been keeping my eyes wide open and when mistakes are made, I make efforts to question my behaviors and intention.

In the past, I would not have been able to quickly pinpoint mistakes made. I am growing. I am trying to be patient with the process. Healing is messy and chaotic, at times, but exciting and inspiring as well. Hopeful and happy to be on the path. It feels like home to me.

Healing is Hard Work: 6 Tips for Healing

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Feeling at Home

Alone in my sanctuary

Of birds and trees

I strip of earthly blanket

Where no one can see

It’s one of those days

Of sun and of rain

I rest on a rock

My thoughts, unchained

I feel beauty in all forms

Taste it with my tongue

I let it slip though my fingers

My pinkies, My thumbs

The rain washes over me

Drenching my skin

The sun peaks out later

I go for a swim

I am not separate from anything

All at once, not alone

I am living in all things

Finally feeling at home.

I remember writing this poem nearly eleven years ago. It was roughly three years after I had separated from my husband and a few months or so before I began the ten year abusive relationship with my narcissist. I had recently lost a lot of weight and was hopeful and excited to begin dating.  I was in my mid-thirties and was relatively naive when it came to men. I also remember feeling quite vulnerable and anxious at the time because my weight had always been a form of protection for me and my recent weight loss made me feel naked and exposed. It felt exciting and unsafe at the same time.

This poem marks the calm before the storm. Revisiting it now, it is not only bittersweet, but stirs emotions of hope and pride. Often my poems were like rays of sunshine for me, cutting through to the forest floor, scattering light on the trees and twigs, reassuring me that I was still on the path. I felt lost a lot, but looking at past poems and journals reveals that I was always “present”, questioning and searching, even though some periods were dark and miserable. The poem above brings me joy because it displays where I long to be, “home”. And “home” is something I am creating for myself.

I’ve been thinking a lot about healing. I’ve made healing an intention of mine for nearly 4 years now. I have struggled along for years never truly thriving. I have been anxious, empty, angry, and severely depressed. Within the past two years things amplified to the point that I was no longer effective at work because I would miss due to migraines, IBS, and depression. Currently, I feel very unraveled and isolated. I don’t feel a part of things and I have chronic pain. And yet, a part of me feels that I am all unraveled because I am in the midst of an exciting and amazing opportunity to rebuild my life in self-love, giving myself stability and a sense of self-worth and empowerment.

I am in the process of carving out my self-esteem based on no one else’s expectations or ideas, but my own. I find this process daunting and challenging, but if successful, my “Decade of Darkness” will have been worth it. I feel I will have the immense blessing of possibly helping others through the “darkness”. I look back and see the people and the practices that blew open wide spaces for me, clearing the psychological debris that was entrapping me. There were living torches along my path that illuminated the way. There were voices that shouted “You are not alone” that reverberated on the walls of that dark, cold, tunnel that I sat in for a time. I hope sharing my story will reach someone, soothing them and giving them courage to keep going.

Healing is hard work.  Life is a struggle, at times, and in that struggle some often feel ashamed to reach out and ask for help. I’m sharing below 6 healing tips. These are things that are helping my now and some of them I have not mastered. If you like, feel free to add another “tip” in the comments section!  We’ve got this!

6 Healing Tips:

  1. Accept where you are currently at with compassion. Embrace your struggle.  Do not try to wish it away or try to “fight it”.  Accept it without shame and without comparing it to others. Notice how it is yours and yours alone. When the storm begins to rage, be still and don’t flee or fight, try listening to what the storm is communicating to you. We cannot always change certain circumstances, but we are able to decide how we will manage or cope given the cards dealt.
  2. Establish boundaries to protect your emotional and physical well being. It might be necessary to let go of certain people or habits to achieve healing and eventual peace. Sometimes, this seems impossible. Some of us are in abusive relationships and we want to hold on to a dream that is not longer a reality. Some of us have family members that hurt us and cause us pain. You have every right to peace and that may mean setting firm boundaries and even leaving a loved one. Ultimately, you deserve to be healthy and at peace. This may mean cutting ties and that might seem intolerable to you right now, but there may come a time when holding on becomes harder than letting go.  It is ok to “let go” and you will grieve and eventually fill the space with things and people that allow you to heal and be at peace.
  3. Put yourself as the priority. You are the most important person in your life.  Without you, where would you be? So, YES! You matter! Putting yourself as the center of your plate and filling your plate with “food” that you choose is so important to the process of healing. Often, many of us have negotiated our “food” away, leaving us scraps to the point we barely can feed ourselves. Go ahead and take a heaping helping of what you find delicious. Maybe that is a hobby of making jewelry or a sport that you used to love, but you gave it up for someone else’s needs. It might be a challenge to do, but work with others in your life to ensure that you have some things on your plate that are just for you! You deserve to have some food on your plate that you find delicious, after all it is your plate!
  4. Don’t compare yourself to others.  Everyone has a different journey. It’s super easy with social media to peruse your friends profiles and feel unworthy or “less than” because you did not achieve this or that! I have been guilting of doing just than and then I realize that I am being silly! None of those people have been in my shoes and what I have accomplished despite the fact I have a mental illness and experienced an abusive relationship, is amazing! We all are on a very unique and independent journey.  There truly is no comparison.
  5. Have FUN! Every day make a conscious attempt to laugh and have fun. I think we forget that it’s ok to just enjoy the moment and “let go”. Go watch some children playing to be inspired to use your imagination more. Kids just jump right in and are totally submerged in the present moment. Ever watch a baby or young kid cracking up? You can’t help but to laugh right along with them, right?  Laughter is infectious and it lifts us. Do the activities you enjoy every day and don’t feel guilty for relaxing and having fun. We are meant to laugh and be joyful.
  6. Be patient. Good things come to those who wait. You are the good thing!! When it seems to be going slow or you relapse into your old ways, be patient and kind with yourself and the process. It’s OKAY. Maybe you needed to go back again, even several times, to truly learn what you needed to learn. We all do this and it is okay. I used to beat myself up and get angry! But, now I am kind to myself and accept the process.

Hope these are helpful!! I am truly a work in progress and I am learning to use the tips above to embrace the process of healing.

Wishing you ample light to illuminate the way for your journey of healing and self love!

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