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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Bipolar I: The Suffering, The Stigma, and The Shame

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That’s me above and my pup, Gracie.  This was about 2 years ago while I was still working.  I was living in Seattle, WA.  And, trust me, was severely anxious even in this picture!  I’m currently waiting to be approved for SSDI and hope to one day make a full recovery.  If I do not, I hope to live gracefully with my illnesses of: Bipolar I, PTSD, ADHD, and PMDD.  Just trying to accept each day as it comes and continue learning!

The suffering we endure related to our mental illness is amplified by the stigma and shame surrounding it.  Let us tease out each of these concepts and acknowledge the impact each has on our lives.

The Suffering: Those who struggle with a mental illness do so due to biological changes in the brain that are often difficult to manage and control.  No one chooses to be mentally ill, not for a certain time period, or even for a day!  Most of those who suffer were active and involved prior to the onset of their mental illness.  The illness more than likely crept along, gaining momentum, until one day it was painfully obvious to others that something was “not right”.  That something presented itself as a combination of symptoms to possibly include: obsessive & intrusive thoughts, hallucinations and/or delusions, anxiety, panic attacks, depression, disassociation, etc.  The sufferer is often aware, on some level, that his or her thought processes are not correct and may seek help due to the uncomfortable and debilitating symptoms of anxiety or depression.  Some people who suffer with a severe mental illness lack the insight needed to seek treatment.  In both cases, the person suffering has not done anything to invite the “illness” into their lives, no one intentionally wants to have their ability to control their emotions and perceptions altered or compromised in any way.  Sure, there are individuals who use recreational drugs that alter their minds, but even so, no one would want to remain on a “trip” indefinitely with their perceptions altered.

I’ve often compared my illness to someone having unwanted side effects of a drug.  Except, those struggling have never ingested a substance, nor do they have the ability to control or ceases the symptoms by removing a substance from their life.  The symptoms also differ from the following examples of “side effects” in that they are often more severe and the onset and duration of symptoms can be unpredictable and uncertain.

For example, a person having way too much caffeine may experience some symptoms comparable to mild mania in that they may be: edgy, anxious irritable, energetic, etc.  Their mind might race and they may feel overly optimistic about what they can accomplish.  Another example I give is that depression can feel somewhat like taking too much Benadryl for an allergy attack: one can feel foggy, exhausted, excessively sleepy, and withdrawn.  In drawing these comparisons, I am trying to help a person who doesn’t suffer understand that the symptoms are not only biological, like side effects that must wear off, but they are also difficult to “snap out off”.  Unfortunately, for the sufferer, it is not as easy as discontinuing a medication to stop the unwanted side effects.  Imagine, living life and all is going relatively well and then one day you get trapped in a cycle of “side effects” in which there is no escape.  Sounds like a personal hell, right?  It is.  I have lived years in the cycle of severe anxiety desperately trying any and everything to get relief.  Often it is years of trial and error, until relief arrives very slowly over months to years.  It is something one has to learn to cope and manage with and it takes time, persistence, and commitment.  This is the suffering that most people do not understand, while others do not even acknowledge.  The latter leads to another type of suffering, compounding the already difficult task of managing a mental illness.

The Stigma: Those who live with a mental illness also have to “suffer” in a world that stigmatizes and shames those struggling.  There are many people that question the validity of mental illness and have unfair and unrealistic expectations of those struggling.  Often people who have a mental illness feel that they must hide their struggle from the workplace, for fear of retaliation.  They also may not get treatment and suffer needlessly for many years because of the shame that is associated with asking for help and admitting that they are sick.  I personally have lost jobs and experienced discrimination in the workplace when I requested help in the form of accommodations.  My struggle was not viewed as credible and I was seen as a “troublemaker”.  Even though we have certain rights through the American Disabilities Act, the laws are not always enforceable and the EEOC (Equal Employment Opportunity Commission) is very slow to act.  The reality is that the stigma surrounding the mentally ill discourages people from getting help and it prevents people from disclosing their disability in order to get help in the workplace.  The effects of stigma can be devastating and can mean job losses and inadequate care.  Many of the failures stemming from those suffering are not the fault of the individual struggling, but of the inadequate and unjust system that perpetuates stigma and negative stereotypes.  The shame must be placed on a system that is inefficient when taking down barriers that would lead to progress for those struggling.

The Shame:  Many people who live with a mental illness feel ashamed of their struggle and this leads to additional struggling and depression.  I used to do a fair amount of self-loathing due to the multiple times I would start a job and then “fail” due to the increased symptoms relating to my illness.  I realized over time that I wasn’t actually failing, but was suffering under a system that would shame me to the point that I would “give up”. My work was always praised, but my attempt to work with a mental illness was harshly criticized.  I was even told at my last job that I was disqualified due to my disability.  This caused a relapse and I spent several months stewing over my life and my lack of success due to my illness.  It took a lot of soul searching to separate my illness from my identity.  In time, I could see clearly that my illness has robbed me of my potential, not my talent, motivation, experience, or passion.  It was how I decompensated during times of stress due to my illness that wrecked me.  This has prompted me to respect my illness for what it truly is, a devastating biological illness that affects my mood and perceptions and is often outwardly presented in behaviors.  I began to see the distinction between myself when I am suffering and myself when I am not.  I challenge those suffering to let go of the shame you have relating to your behavior when you are sick.  Focusing on the negative behavior that arises during an episode often will only serve to keep you hooked in a cycle of shame and regret.  Instead, give the illness the respect it deserves and spend time finding ways to aggressively fight it and keep it at bay.  If you are like me, if will more than likely rear its ugly head again, but this time I will forgive myself and instead of lamenting the mistakes made when I was chained against my will and suffering, I will get busy working to get ahead of the next episode.  I honestly want to be like a hunter and become skilled at tracking it down, intercepting it before it begins!!!

I hope this was helpful.  It is a struggle, and you deserve to know that someone out there sees your struggle, believes it, and is right there with you.  Thanks for reading!

Bipolar, You are Busted!

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Hey Bipolar!  You are busted.

I see what you have been doing and I am on to you.  For years, you have come in unannounced and unexpected, hijacking my mood and perceptions and even altering my behavior.  I never once gave you permission to rent a space in my head, wreaking havoc in every area of my life, often down to the minute details.  You came in so slyly that many around me questioned your existence, often asserting that I could easily “shake you off” if I truly wanted to by exercising or thinking positively.  They were unaware how you hung on to me, smothering me, refusing to let go.  There were even times I loathed myself due to your presence, feeling powerless, weak, and ashamed.

I would do ok for awhile and begin to make plans, only for you to come riding in on your dark horse, capturing me, and dragging me to the ground.  Days were spent in bed, numb and dissociated from the world around me.  People would call, but I was too exhausted to  do much of anything and there were days I actually dreaded walking to the bathroom.

I would force myself to get up and go to work, but was anxious and depressed often from having to expend so much energy to hide you and keep your symptoms at bay.  I was often praised for my work, but your relentless presence caused absences and this inevitably resulted in job losses.  I was angry that my talents, skills, and potential took a back seat to your ominous and foreboding presence that would not leave.  It seemed unfair, cruel.

There were those occasions you showed up so strongly, I was pushed into a frenzy, often manic and obsessive.  You would have me spinning and hooked so tightly on a topic, that I’d often lose track of time and space until you dropped me with no warning, back into clarity and calmness.  I was disoriented and disgruntled.  You would then leave me to pick up the pieces from the mess created by those fanciful and frenzied moods.  Often in those spaces, I was raging and could hear people in the far distance asking” “Are you ok?” and “Are you rapid cycling?”; Yet you had me in a vice so tight that I couldn’t come up to the surface to breathe.  It’s a very undignified position that you put me in, over and over again.  If I could hold you accountable somehow, you’d deserve a life sentence for robbing me of my potential and peace.

I went through this cycle for years, often absorbing what should have been attributed to you.  I had a difficult time separating myself from you and questioned where you ended and I began.  You took up an enormous space in my life.  I’m still doing my best to diminish and contain you as much as possible.

Many people in my life, from co-workers to partners, thought on some level that I could contain you if only I tried and I was seen as not credible, lazy, dramatic, etc.  I was repeatedly blamed for your presence and that alone was damaging and devastating.  Your antics colored my existence, leading people to believe that your symptoms were my personality.  I went along with this for years confused and bewildered, until one day I saw the pattern in its entirety and I said, enough.

Bipolar, you are busted.  You do not get to claim my identity or any part of my personality.  You are an only an illness, and a shitty one at that.

I realize that I still have to live with people not understanding your presence in my life.  I have spent years living with you and even I am often baffled and must search for answers.  I will find ways to wrestle you to the ground and contain you.  Lithium only goes so far.  But, I won’t let you make me feel ashamed anymore for the times I am taken against my will, spinning.  I am making a promise today and always to let you know who is the boss.  You don’t define me.  I will find ways to decrease your presence in my life and one of those ways is to not get caught up in angst and anxiety when I’m dropped by you after an episode.  I’m just going to accept it and “address it”!

Bipolar I is a lifelong, chronic illness that requires effort and persistence to manage and cope.  Shedding light on the struggle can release the shame that potentially keeps someone suffering & sick.  So many steps to the healing process, and I do not feel I was truly acknowledging how much shame has kept me trapped and stagnating.  I will keep fighting, acknowledging that I live with a severe and persistent mental illness that has known cure at this time.  And, I will not be bound to the guilt and shame of an illness I have no control over having.  It chose me, not the other way around!

 

 

 

 

The Metamorphosis Series #1: The Suffocating Cocoon!

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I won’t stay stuck here forever.  It’s a dark and suffocating place.

All of us have areas of our life that make us feel unworthy and unloved.  Some of those areas go back to a time when our esteem was first forming.  For some of us, we were stunted by abuse or neglect and now are left trying to pick up the pieces that were not given to us.  This is extremely hard work.  I wanted to write this piece because we collectively can benefit from hearing other people’s pain to learn that we truly are not alone.

There is no shame in acknowledging that certain tools were left, often unintentionally, out of our toolbox.  Many of us struggling, to no fault of our own, did not have a solid foundation in our formative years.  At times, our needs may have been overlooked resulting in poor coping mechanism and difficulty setting and maintaining boundaries.

As a result of a difficult past, I developed a host of ineffective coping strategies I utilized to try and to get my needs met.  I feel that those who have hurt me, often did so unintentionally, often without awareness of their own issues or mine.   Perhaps they would have been more empathetic, had I been coping more effectively at the time and communicated my needs in less abrasive ways. Those who harmed me with intention often had their own issues of self worth.  I feel sharing has the power to set us free from the patterns that have become deeply entrenched in our minds and thus reflected in our behavioral patterns.  Often these patterns of behavior mirror back to us what we believe about ourselves and further imprison us, committing us to an false identity that leads to the self-fulfilling prophesy of failure, resulting in low self esteem.

Clearing a path for your authentic self to emerge is difficult work that is cumbersome, requiring courage and persistence.  A lot of this work is not linear, and it can not be completed in a vacuum.  Meaning as you heal you often are still in the same environment and around the same people who will challenge the healing process, skeptical of the changes you are making.  This may even mean you have to distance yourself from certain people who are not willing to accept the person you are becoming.  Often, healing is brutally messy and even painful.  But, it is a process that I believe to be worth the endeavor, despite the chaos that can ensue for a few years while things adjust.

This has been an excruitiatingly painful year for me.  In this year, I have faced discrimination in the workplace and lost my job.  I also cut ties and went “No Contact” with my Narcissistic after having a very tumultuous and abusive relationship with him for a decade.  And, lastly, it is the year that I was scapegoated by my family and blamed for the turmoil and divisiveness that was stemming from my sister’s struggle with addiction.  All of these invalidating experiences, where I was gaslighted, devalued, and discarded, resulted in a very unstable time for me.  I relapsed with my Bipolar illness and became suicidal for the majority of the year.  I was very hurt and enraged and spent the year fighting with my Mom and sister trying to salvage the relationship, but also determined to defend my reality in the process.  This pain lead me to time spent questioning my reality, my motives, and my intentions.  This process lead me to links in my past, shedding light on places of hurt that had stunted my growth, causing self-doubt and despair.  Being so vulnerable and sharing openly, I feel, only will serve to diminish the power these myths have over me that claim: “I am not good or worthy”.  And it is possible that my reflections will resonate with someone along the path of healing, and together we will heal.

In my formative years, there were some remarkable events that caused me significant pain, influencing my world view and challenging my self esteem.  One of these events being when my biological father released his rights to me, not wanting to know me or have me as part of his life.  I won’t get into the rationale as to why this occurred.  I was too young to remember the event, but do recall the years in my life of wishing I had an affectionate father who made me feel safe, secure, and valued.  This one event had impact on my self esteem and worth that followed me throughout my life.

At age four, I was molested which left me feeling powerless, invisible, and ashamed.  I was not considered in that event, just a little girl whose only purpose was to provide pleasure for the perpetrator.  My voice was muted and I was devalued.  I absorbed the shame through this event and when I was much older, in my teen years, I felt very ashamed and guilty for having normal thoughts and feelings about boys.  I was heavy for many years in order to remain invisible to men and feel safe in my skin.  This event impacted me greatly and as a result later in life, I married a gay man to avoid feeling violated.  I did not know for certain he was gay prior to marrying him, I just knew that I did not feel threatened by him in any way.  When I lost my weight after being divorced, I became involved with a man who was a narcissist and the relationship seemed like a parallel to my molestation.  I felt used, devalued, and invisible in the relationship and it took years to finally reclaim my self worth and separate from him.

My family environment was also turbulent as well.  My step-father was intimidating and abusive at times, shaking  and pulling my hair and throwing things.  It wasn’t an every day occurrence and there were times he did try in his own way.  Our family has many good memories and my parent both have accounted and apologized for the past.  Still yet, I lived in fear and tried to be as perfect as possible.  My sister and step-father butted heads and it made for a very scary and not so pleasant upbringing.  My sister left me a lot alone with my step-dad as my mother worked, and I was terrified and often felt abandoned.  I wasn’t allowed to express anger or really have a voice.  This caused me to stuff lot of my anger and ultimately I never really learned how to express anger in healthy ways.  I still struggle with this today.

Throughout my life, I have been misunderstood and treated differently as a result of suffering with two disorders: ADHD and Bipolar I.  As a small child attending kindergarten, I often was berated by the teacher for having ADHD.  I was different from the other children and was asked often if I had “ants in my pants”?  I didn’t understand why I was getting into trouble all the time.  In my adult years, I loathed myself even more when I became sick with Bipolar illness.  I had friends who laughed in my face when I told them I had gone into a psychiatric hospital for care.  One friend told me she did not believe in mental health problems and that I needed to “buck up & get over myself”.  These sentiments were later expressed in subsequent years by employers when I attempted to get accommodations in place during an episode, so I could remain working.  I was discriminated against and let go or it became so uncomfortable that if I did stay, I eventually left on my own accord.  I’ve experienced years of frustration, often being misunderstood by friends, family, or coworkers who feel my illness is just an excuse I make up for bad behavior.  It is dehumanizing and extremely hard to not only have an illness and suffer greatly from it, but then have your credibility questioned as a result.

Lastly, My sister has struggled with addiction for years and it has caused immense strife in our family.  I confront while others often enable, defend, lie, and hide.  I would have let things go, but she had five children, all of which are young adults now, and I’ve had to watch them struggle along with their own stories of addiction.  Not one of them walked across the stage to graduate and two of them do not even hold GEDs.  Their potential was robbed without their awareness.  I longed for a better life for all of them, including my sister.  This situation has truly been difficult to navigate and I am often devalued in the process.  It has caused me to question my reality and whether or not I am a good person.  It has truly been trying, at times, and I have often lost my patience in rage and despair.

Even with all the strife in past and present relationships, I have always tried relentlessly to reconcile things.  I struggle with letting people go, even if they are not good for me.  I’ve lost a lot of trust in humanity and in others because of the way I have been treated by those close to me.  I admit all my wrongdoings and I still long for the day when I feel accepted and loved completely.

I often feel like a scared kid, just hoping someone picks me up, holds me, and helps me walk through this pain in my life.

I’ve decided that someone has to be me.  We all must manage our own pain, develop better boundaries, and love ourselves.  We must forgive ourselves.  Sadly, I can forgive everyone who has hurt me, but I have the most difficulty forgiving myself.  I often desperately continue to return to those individuals in my life that are not truly open to loving me, or even themselves.  I become angry when they devalue me and my reactions become the rationale for why they leave.  And so, I must go through the difficult task of starting over and rebuilding, learning to let people in slowly, with stronger boundaries in place.  I also have to disengage from those increasing the intensity in my life which often leads to relapses with my Bipolar illness.  This is a balancing act.  I hope sharing helps others out there who are also navigating several tough situations at one, they are not alone.  It’s messy, it’s hard, but it’s possible.

And this is my toughest lesson to learn and my greatest challenge in my lifetime: To love myself enough to develop boundaries and slowly let those people in that will enrich my life and foster my growth and maturity.  I believe they are out there.  I truly am in the middle of this metamorphosis and I hope to one day look back on my life and see that I did it, I changed.  I forgave myself, loved myself, and let go of those who are unwilling or unable to join me on this journey.  No one said love would be easy, but I do believe it is worth it.  And if you are struggling with self worth, I will say to you: WE ARE WORTH IT.  Every human being is worth the journey towards healing and wholeness.

I’m using this piece as a series and am going to follow up with posts of thoughts and progress regarding my healing process.  It helps me feel not so alone.  Happy healing!  Thanks for reading!