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

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It’s broken. It’s shattered. And, it’s literally killing people every single day.

The system that is currently in place for serving individuals who are struggling with a mental illness is fragmented, fractured, and incompetent. I have been a recipient of mental health services for nearly 30 years now and feel that both access to and quality of treatment has gotten worse, not better, over time. I believe many of us want to see change for ourselves and for our loved ones who struggle, and yet, the problem seems overwhelming. Where to begin? Ultimately, the care provided for this population of people needs to be driven by a culture that cultivates sensitivity and demands practices that ensure the preservation of the patient’s dignity. There are many systems that need to work collectively to ensure that patients are treated with respect and in the same manner as one would treat a heart attack or stroke patient. When our culture begins to value the lives of those who are struggling with a mental illness, the potential for change will increase exponentially, not only for the individual, but for the community as well.

I would like to offer some solutions from the consumer’s point of view. I have been hospitalized 4 times in-patient for mania and depression. I have never been committed and have always went voluntarily to the hospital, seeking help for the symptoms I was having at the time. The first two hospitalizations were in the early ’90s and the last two were in the years: 2015 and 2017. The last two experiences were actually much worse, which was surprising to me as I thought the quality of treatment would have improved from the past. It was actually much worse.

Here are some of my personal take aways from my past two inpatient hospital stays. I can tell you that I have needed treatment this past year and did not feel “safe” to go to the hospital.  I feel safer staying out of the hospital with a friend, than ever going into an a psychiatric hospital for crisis-stabilization treatment. Here’s why:

Crisis stabilization is not treatment. It has become basically a “holding tank” where those in crisis are admitted, medicated heavily, and provided some basic coping tools throughout their stay in groups they attend while there. There is little to no therapy or processing and discharges are often not thoughtfully planned or put together. I was discharged from a hospital with no services set up because the social worker refused to help me access services because I had not yet ended the relationship with my current provider who was a referral source for the hospital. The social worker placed a referral source above helping me access more appropriate services that were closer in proximity to me. I felt by going into the hospital for severe depression and suicidal ideation, I would leave with services set up to ensure continuity of care. The social worker of the hospital placed business needs and the relationship with her referral source over my recovery process. I was willing once out of the hospital to contact my provider who was roughly an hour away from where I have recently moved to, but was dismayed when services and new providers could not be set up prior to leaving the hospital to avoid disruption of care. The lack of treatment, evaluation, and discharge planning left me feeling every bit as depressed as when I entered the hospital, but with the resolve to not ever be admitted again.

Another concern is that they put women and men into treatment together, often on the same hall in close proximity. People might feel that this is an acceptable practice considering that they do 15 minutes checks to ensure the safety of the patients. However, my personal experience is that it is a major distraction and often impedes the process of recovery. Often people who are struggling have poor boundaries and are unable to protect themselves. Some patients might be especially vulnerable due to hyper-sexuality, a symptom of mania. I briefly worked at a psych hospital where I learned that two patients were caught having sex together on the unit. This upset me because when someone is manic and unable to execute good judgment, I feel they should be protected from an occurrence like this. If she had become pregnant from this occurrence, it could have become a liability for the hospital. Some female patients might also be struggling with trauma issues and certain male patients, who lack boundaries, may perpetually trigger female patients. Male patients also can be victims of female patients who lack boundaries as well. I was triggered by a male patient rapping violent lyrics while pacing outside my door, using my name within the rap song. I informed the male nurse that it was troubling me and he downplayed my concerns,  stating it is just his mania and rolled his eyes at me. I felt vulnerable and scared when I already was struggling.

Patients are treated like prisoners. I agree that the environment must be kept safe for the patients and the staff. Still yet, there are some instances where this type of treatment becomes detrimental to recovery. Often patients of varying degrees of severity are placed together and the environment is stark and bleak. I can remember a hospital stay where I had brought a coloring book with me to color in to help me cope. I was denied access to my coloring book because it was non-conventional with cuss words in it. It may seem silly to most, but the coloring book represented security to me in an unfamiliar space when I was struggling with severe anxiety and depression. Often, you are stripped of everything you own and do not have access to resources that can provide comfort and lower anxiety.

At one hospital, I was made to wear a uniform initially and it felt demeaning and degrading. At this same hospital, staff were separated from the patients by a wall with glass so they could look out and observe patients. It felt, to me, like I were an animal in the zoo being observed. It also made me feel unsafe as the staff were divided from the patients. I do understand a need for a separate space for staff for the completion of paperwork and what not, but to have staff separated from patients in this way felt dehumanizing. Every move made, even getting a drink of water, had to be granted permission and often you had to prove yourself over time to earn privileges, such as going outside. I have never gone to jail, harmed anyone, or fled treatment, so I felt punished. The experience was frustrating to say the least. Certain staff who were less educated and informed than I am about my illness, were abusive with the power they were granted in these situations. I was overmedicated a few times and was even threatened when I declined to take the medication prescribed because I knew it was too much. There were other patients who expressed they felt overmedicated as well. As a mental health patient, you are aware that others will doubt your credibility regarding your concerns, and this allows for little protection in the way of poor quality of care or mistreatment.

The length of stay is often inadequate for stabilization and longer treatment facilities, such as residential care, are out of reach financially for most patients. Often a patient is discharged at the first signs of stabilization, which is defined as not being a danger to themselves or others. However, most medications can take quite a bit of time to actually demonstrate effectiveness and by the time the patient begins to have side effects or shows the medication to be ineffective, they are already out in the community not being closely monitored. This results in a revolving door for many chronically mentally ill where the protocol is to stabilize, rather than treat the mental illness. My nephew has remained sick for nearly half a decade or more, bouncing in and out of hospitals for brief stays, but never truly having thorough evaluations and treatment. In the past, hospital stays actually included treatment and were longer in duration to ensure that progress and stabilization occurred prior to discharge. The current system is a band-aid approach to care and results in an over-burdened, costly model of care where people do not recover.  Residential care, which is longer in duration and includes intensive treatment, is often denied by most insurance companies, rendering the majority of mentally ill lacking access to what is needed to truly heal and recover.

In addition to the lack of appropriate treatment in inpatient settings, various therapeutic outpatient programs often have long waitlists and/or not covered by Medicaid or other insurance plans a patient may have. I have currently been waiting to begin Dialectical Behavior Therapy (DBT) for over six months now. I have applied for a Health Care Grant to cover the cost of the program and have not heard back yet if I am awarded the grant. I am also stuck waiting in the grueling process of trying to get onto SSDI and SSI benefits. If I had these benefits, I could afford the therapy I need to get well.

Lack of access to effective treatment for the mentally ill is further complicated by discrimination in the workplace and stigma which makes it challenging to maintain employment. To add insult to injury, the struggling individual with a mental illness who loses employment not only will often lose their insurance and providers, but there literally is no safety net for those who fall. Social security programs in the United States can take up to 3 years to be approved and people often end up homeless or with an exacerbation of their illness due to the stress of not having any financial assistance to survive.  Programs such as vocational rehabilitation exists, but often have long waitlists to receive services. It doesn’t pay to have a mental illness in America, one often ends up traumatized by the system with their only sin being that they have an illness they never caused or desired. It is a harsh reality many of us are living with every day, but our concerns are often overlooked and ignored as our credibility is continually in question due to the stigma surrounding our struggle.

I have been advised by therapist and friends not to return to work until I complete the DBT programs which can take up to a year. I may not realistically be able to follow their advice because I am at risk of losing everything if I do not have some type of income. I believe that working will always be difficult for me, but possibly doable if employers could be open to employing and accommodating an individual struggling with a mental illness.  I was doing a good job in the past, but needed a more flexible schedule and to possibly work from home occasionally. I felt what I requested was doable and absent undue hardship on my employer, but I was let go anyhow at my very first accommodations meeting after a medical leave for my illness that my employer had encouraged. It was devastating and caused a relapse.  I was never granted the opportunity to attempt working with accommodations in place. I quickly applied for vocational rehabilitation services through the state, was determined eligible, but placed on a waiting list. That was 8 months ago. It has been 10 months since I applied for SSDI and SSI and I have not received any assistance. Again, there literally is NO safety net for individuals who are struggling with a mental illness and the programs that provide treatment and vocational rehabilitation programs are often waitlisted or unaffordable , rendering them inaccessible to most people.

My goal in writing this is to bring awareness to the issues surrounding recovery for the mentally ill.  Even if you are educated and aware of various programs that provide assistance, access to them is severely limited. I have tried every avenue to get well and have been waitlisted, often with no date in the future to guarantee services. I have been denied financial assistance from SSI and SSDI to meet my basic living needs. Like millions of others waiting, I have to secure an attorney and fight which may take up to two more years. I currently have other un-met medical needs, such as a missing front tooth from an accident when I was 17, where the crown fell out that I cannot address right now because implants are too expensive. I am living with a friend and receiving some help temporarily from my mother, but the assistance I am receiving from friends and family cannot go on indefinitely as it is placing strain on them as well.

Change needs to occur and now to address the crisis surrounding the poor quality of care for people living with a mental illness who become unstable and require help. Here is my short list of suggestions that need immediate action as too many innocent people are experiencing abuse and neglect in our broken healthcare system.

  1. Implement a consumer driven task force in each state composed of individuals who struggle with mental illness and their loved ones to ensure inpatient psych hospitals deliver quality care to their clients. This should be part of the regulations to ensure the voice of those struggling is heard loud and clear.  We are the consumer and must demand better.
  2. States must implement short term disability that is available immediately to ensure patients do not have their care disrupted and they can meet their basic needs to survive. Doing so, will facilitate recovery and programs such as SSI and SSDI will be a last resort.
  3. Recipients of the short term disability program should be required to receive vocational rehabilitation services as well as residential and/or outpatient care to facilitate recovery.
  4. We must invest in early treatment that is aggressive and intensive as early intervention along with vocational training will possibly provide a true path to recovery and less reliance on welfare programs in the future will be achieved as a result.
  5. The Americans with Disabilities Act (ADA) must be revamped to include specific provisions that hold workplaces accountable for ensuring that discriminatory practices do not occur. This will give the Equal Employment Opportunity Commission (EEOC) the “teeth” needed to handle discrimination claims more quickly and aggressively.
  6. Places of employment should be provided education on how to appropriately accommodate individuals suffering with a mental illness in the workplace.

I hope some of my ideas and concerns resonate with some of you who also want to see change. I am passionate about these issues because I have suffered and I know many others who have as well. I hope that I can join others one day to truly make a difference in the lives of those struggling with mental illnesses. I want them to know that they are very worthy of the lives they desire for themselves and to keep moving forward as difficult as it can be on certain days. There are people out there who understand and “see you” and are rooting for change. Together our words will make a difference and I am hopeful one day soon to be engaged actively in endeavors that bring forth change in these arenas.

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I Don’t Really Want to Die, But…

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I don’t really want to die, But…

I’ve been fighting a war with my family for too long now. A war to feel believed, seen, valued, and considered. A war to stop the enabling of addiction and dangerous behaviors that are harming the ones I love. A war to get people the help they need so that they can recover and have lives that are peaceful. A war to bring forgiveness and closeness to our family. A war that always ends with me raging into the battlefield, losing my dignity, and feeling like a failure. I don’t want to die, but I don’t want to live fighting this war any longer that I never win, not even one, single battle. And my family isn’t winning either. Those struggling do not have access to quality care or to economic opportunities to empower them. This life, is becoming too heavy.

I don’t really want to die, But…

I’ve been battling a war of mental illness for far to long, with too many barriers to treatment. I continue to fall through the cracks, even though I am educated and an advocate for myself. Treatment has been interrupted over and over again by insurance being dropped when I’ve lost jobs. I’ve been told for nearly a decade now that DBT Therapy is the most effective treatment for my condition, and yet, I have not been able to access it due to costs, waitlists, or loss of insurance coverage. I am currently on a waitlist for DBT and have applied for a grant to afford the cost of the program. I have been advised by my therapist to not work until I go through the treatment which is 6 months to a year. I am likely to fail at work again if I attempt working and then treatment will be disrupted. So I wait anxiously for an answer on the funding and for my turn to come up on the waitlist so I can finally get help.

As a mental health patient, I have experienced poor treatment where I waited 36 hours to be admitted only to be forced to leave treatment the next day when I was not ready to go. I have been treated poorly in the ER and have had symptoms ignored while practitioners made inappropriate comments about my mental health status. Due to not having stability at work, I have lost insurance coverage that has inevitably disrupted care and continuity with providers and as a result I haven’t gotten the treatment needed to truly succeed at work. It is a vicious cycle that has nearly destroyed my confidence and health.

I don’t really want to die, But… 

I’ve been waging a war for years against employment discrimination that has left me unemployed and devastated. After experiencing discrimination at several workplaces when I requested accommodations for my mental illness, I have decided to throw the towel in for now. It’s not only physically and mentally draining to work with a mental illness, but it is traumatizing when individuals treat you unjustly after having disclosed significant private information about a highly stigmatized illness. I have repeatedly, in good faith, handed over my personal health information that was requested to put accommodations in place and each time it backfired. I left each job feeling more and more vulnerable and without a recommendation for employment from my supervisor. My faith was completely shaken when one of my last employers, a state agency that provides services for individuals with disabilities, actually denied me access to employment, firing me after a medical leave at my very first accommodations meeting. I was devastated. Again, it is hard enough to work through panic attacks, severe depression and anxiety, mania, etc. without the additional stress of discriminatory practices.

My quality of work was never in question at any job I held, it was the symptoms of my illness that caused concern and employers were unwilling to accommodate me. As a result, my right to work has been denied. Treatment for my illness has been interrupted over and over again due to loss of medical coverage and having to move to avoid homelessness. This has caused numerous relapses of depression and anxiety. I have even developed PTSD from losing jobs, experiencing nightmares and severe panic attacks when starting a new position. It’s been a long and difficult struggle that most dismiss because they lack awareness and understanding of what it is like to live with a mental illness.

I don’t really want to die, But… 

I am fighting a war to meet my basics needs while government programs like SSDI and SSI  reinforce to me that I am insignificant and unworthy. In the midst of severe stress and anxiety where I am having to rely on others to help me with housing and my car payment, SSDI and SSI are hanging up on me, lying to me, and blaming me for mistakes hey have made in processing my appeal for my disability benefits. They lost my paperwork of 95 pages, joked about shredding it, and once it was resubmitted at their request, did not use it in deciding my case. And even though it was not my error, they have refused to redo it.

I have been researching reviews of these programs and their behavior is common. Apparently, these agencies likes to torment those who are already on the edge. Listen up America, we pay into a system that isn’t there for us when we one day may become disabled and need the help. The process is beyond grueling and torturous,  especially since I would much rather work if only I could!! I am living with my ex-spouse out of need, am having my parents help with my car payment, am visiting the food bank, receiving food stamps and a cash benefit of $197 monthly from an Aging, Blind, and Disabled program. I’ve been deemed eligible for Vocational Rehabilitation, but I have been waitlisted for these programs as well.  Guess what America?  You can be doing everything right: trying to get treatment, trying to get training, etc. and it simply isn’t accessible in our country!!

I don’t really want to die, But…

I in a constant monthly war with my hormones that wreak havoc on my physical, mental, and emotional well-being. I have been struggling for years with Pre-menstrual Dysphoric Disorder. I have literally sobbed in doctor offices and have explained over and over that each month for 3-4 days I am suicidal and feel like hell.  I often want to go to the ER because my whole body hurts and the anxiety is un-paralled.  No one seems to understand my sense of urgency or how bad I feel. It has destroyed jobs and relationships. And, is literally a hell of sorts every single month. I found out recently 15% of people who suffer with PMDD attempt suicide. I feel somewhat validated that I am not alone, but still no one is helping me and I am often dismissed and invalidated.

 I don’t really want to die, But…

I grieving the loss from a war I waged for nearly a decade with a Narc where dreams were dashed and faith destroyed. I was abused physically and emotionally and wish I would have had the self esteem to leave earlier. The relationship helped to carve out my self esteem, setting the stage for self love. I grieve the loss of time, loss of family I could have formed, and potentially the opportunity to have children. While others post pictures of their beautiful children on FB and social media, I’m reminded continually of a few bad choices I made which not only robbed me of potentially a family, but also nearly destroyed my trust in men and in myself. I am fearful to start over again and I’m getting older. I am not completely hopeless, but it is a hurdle to overcome.

And so, I really don’t want to die. I was serious about that. I want to live. And, I actually want to GIVE even though I have little at the moment. I still have dreams to make this world a better place despite the struggles listed above. I want to help others realize their dreams. I’m writing to bring awareness of the system failures that we have in this country from incompetence to discriminatory practices that are “breaking people”. We simply must help and love one another. We must do this for each other, You and I. Post this message if you like and share it. I earnestly want to hear other people’s stories of struggle as I know many are struggling in a system that is preventing people from recovering. The systems need to change and people need to turn towards one another, not away. I don’t have all the answers, I do have ideas…. and I have love. Love is what is needed to turn things around.  Spread it… every single day. 

“We shall overcome”

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Embracing the Mentally Ill in the Workplace: My Work Wish List!

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I am currently appealing the initial denial of my SSDI claim for being unable to work due to my Bipolar I disorder, ADHD, and PTSD. I fought going on SSDI for nearly a decade which led to multiple failures and a disruption of my medical care and housing, resulting in an exacerbation of my illness. In my last employment experience, a state agency separated me from my probationary period, stating that I was disqualified due to my disability.  They fired me after a medical leave for my illness, at my very first accommodations meeting.  They were not interested in accommodating me and I lost a great job as a result.  This inevitably caused a relapse and after a year of decompensation, I am just now resurfacing.

And so, I am appealing the SSDI decision as a result of being unsuccessful for the past several years. I am trying to become more stable and acquire better coping techniques prior to ever returning to work. One of my greatest problems arising from my mania and ADHD is my inability to “self pace”. I can accomplish an amazing amount of work in a short time and I learn more quickly than others. But, on the flip side, my mania causes inconsistency that stems from insomnia that eventually leads to crashing in exhaustion, often suffering with severe migraines and IBS. As a result, I miss work and to those who do not understand my illness, they are baffled by my inconsistency.  They will often attribute it to my character which upsets me. I perform remarkably well for a time and receive praise, and then inevitably begin missing work. The lack of sleep and mania often will cause me to be more sensitive and short fused. I become drained by having to “hold back” the mania and come across as short and easily agitated.  This results in conflicts with colleagues and supervisors.  I have tried very hard to prevent this from occurring, but it always occurs in the same predictable fashion: performing well with praise, becoming increasing obsessed and driven, de-compensating both mentally and physically, and eventually collapsing to include conflicts, absences, and termination. It has been a major heartache in my life to not reach my full potential in the workplace due to living with a mental illness.

Sadly, most people attribute my failures to my personality and character, instead of my illness which presents itself in a variety of ways while working. It is soul destroying to disclose an illness and be raw and vulnerable only to be continually misunderstood and devalued.  The stigma surrounding the illness and the lack of sensitivity is traumatizing and I have had multiple nightmares with the theme of working with my illness. I have had therapist stop me when discussing my work experiences because I was getting too anxious and visibly upset. It has been that difficult for me.

I feel the workplace and community needs to embrace the mentally ill working. It truly has to be a compromise of sorts for it to be successful. The benefits far outweigh the risks on either side. I acknowledge that there are some workplaces that are truly sensitive and inclusive, it just has not been my experience, yet. I hope one day once I am recovered, I will be able to be myself, open and honest, about my struggle and I will be valued for my skills, education, and experience and my illness will fade into the background. I recognize the importance of a business running efficiently, I also feel that retaining employees, even those with mental illnesses, will benefit employers in the end. Often employers do not want to take the time to accommodate a person with an illness because they feel it will be time consuming and yet, hiring and training a new employee is more involved and costly. The accommodations process might take time initially, but once accommodations are in place they are often effective, benefitting both employee and the employer.

Here is my wish list should I choose to brave the work world again once I have recovered.

  1. I want to find a place that truly exemplifies a culture of diversity and inclusivity. I want to work for an agency that sees the value in employing people of diverse backgrounds.  A place that longs to hear the voice that often isn’t represented in an organization, the voice of one who is disabled.  I want them to see that it makes their organization stronger, not weaker.
  2. I want to work for an organization that is aware that I have a disability, but also is aware of my strengths and values them.  A workplace that gets that I am often more productive than most, but I do have the risk of decompensation due to my illness. I want an employer that accepts both and works with me to minimize the risk of decompensation so that I can continue benefitting the organization and remain successfully employed.
  3. I want to work for a place that acknowledges my struggle and sees that my intention is to do a good job always.  I don’t want to work for an employer that feels my accommodations request is to get special treatment or have an excuse to do less work. I am a conscientious worker and my intentions have come into question when I was trying to get accommodations in place. My only intention was to remain successfully employed benefitting the organization.
  4. I want to work for an organization that is versed in the Americans with Disabilities Act where they enjoy and value helping those with disabilities remain employed.

On a personal note, it is important for me to find an employment opportunity that will compliment my illness. I have been working primarily in healthcare and that is already a busy, stressful environment. If I am able to work again, it has to be flexible to accommodate my issues in self pacing. I am either lighting speed fast or at home nursing a migraine. My goal will be to explore opportunities that make sense with the illness I live with every day.

I hope this post helps some of you still working and struggling. Maybe you can share in the comments section your experience and what has helped you. I still feel our world has a long way to appropriately accommodating those who are struggling. It takes education and awareness to cultivate sensitivity in the workplace. Mental illness is highly stigmatized and many myths must be debunked for progress to truly occur. I’ve always wanted to work in advocacy and education regarding these issues. I believe everyone who wants to work should have the right to do so, with the support provided to ensure success. Working is such a part of one’s identity and I support anyone who is doing their best to work while living with a mental illness. It is an arena that has immense potential to help restore and remediate one’s health if the process is supported.

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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!

Touched By Living Pieces of History: 6 Lessons Learned While Serving Elders

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Some of the most rewarding and meaningful times in my life were spent serving the elder population as an Activity Director in both skilled nursing facilities and retirement communities.  I enjoyed planning and facilitating events and activities that often brought joy, meaning, and laughter to those served.  We would picnic, play trivia & games, sing, and celebrate the seasons and holidays as they rolled around each year.  Providing opportunities for people to connect with others in meaningful ways was immensely fulfilling.  I’ve often wanted to express my gratitude for the “gifts” I received while serving our senior population.  I have felt “eternally compensated” for the often intangible blessings received.  Below, I share six lovely lessons learned while serving seniors that have enriched my life.  I am eternally grateful for the opportunity I was given to serve and the lessons learned in the process.

Six Lessons Learned:

    1. Age is only a reflection of the length of time lived, it doesn’t define the individual.  Society has a tendency to stereotype older adults, often defining elders in ways that are simply inaccurate and, at times, even insulting.  My years of working with them, exposed me to the rich diversity displayed in the population.  I would often marvel at the fact that most of the seniors I served were more active, both socially and physically than I was.  Some of the residents I served in retirement communities were driving and very active in the community.  One gentleman even owned a plane that he occasionally flew!  Most of them regularly participated in community events such as entertainment, happy hour, and seasonal celebrations.  Many participated in trips, traveling to see museums and ball games, while some actively participated in yoga and even biking!  People often are very limited in how they perceive retirement communities and are surprised to learn that they are vibrant and busy.  Many elders were rich in their social networks and enjoyed a variety of leisure pursuits.  This not only allowed me to have better programming and rapport with my residents, but it also cultivated a sense of advocacy related to issues of aging and a voice to dispel myths and harmful stereotypes.   Those I served were an inspiration to me.  I learned to never assume someone’s limitations based on age alone.
    2. Sometimes the simple things in life are the most meaningful. I have been blessed to witness some of the most beautiful acts of kindness and love in the most ordinary ways.  When working in memory care, residents were particularly challenged and often in need of reassurance due to their cognitive difficulties. Many times these acts witnessed were between husband and wife, a spouse spending  hours reading to their loved one, holding their hand to comfort them, and dining with them at each mealtime.  Simple activities like singing, baking, and playing cards were filled with moments of endearment where residents would look after one another even when all of them were struggling.  One of my favorite moments was seeing the look of surprise, excitement, and sheer delight when Santa arrived at a Christmas party to visit our residents in the memory care unit.  Another time, a woman who had severe dementia who often never spoke, busting out in song when we began singing Away and A Manger and several of us had a hard time not losing it.  Her voice often silenced by her disease, came though in a low, guttural tune in joy and determination.  We knew the music had penetrated her, allowing recall of the tune and words.  This was pure gold to me and I still get choked up recalling that beautiful moment of joy.  It’s what we all live for, joy and connection.
    3. Providing dignity in caregiving is executed through the details.  I have been both a caregiver and an Activity Director and have always made it a mission  to ensure that the care and programs provided were executed in a way that promoted dignity.  For example, as an activity director, I would orchestrate teas for our residents to enjoy.  I had younger staff that wanted to quickly throw a tea together without paying attention to the details which was not dignified to me.  No one goes to a restaurant or someone’s home to be entertained and when they arrive things are not ready or put together.  I ensured that the table was nicely decorated with a centerpiece and all the supplies from sugar & honey to cream were ready so that they did not spend a long time waiting to be served.  This level of planning and preparation demonstrated that they were valued whether it was a tea for those in memory care or those in independent living .  As a caregiver for residents that needed assistance with their Activities of Daily Living (ADLs), like showering and eating, simple details like ensuring that their shirt was tucked in appropriately so that creasing and discomfort was minimized, was one way dignity was preserved.  I learned the valuable lesson that details are important and that our dignity is preserved in the process of being aware of the “small stuff”.  I guess the saying “little things mean a lot” rings true when ensuring that a resident’s needs are met.
    4. The right recreation programming cultivates connection and purpose through limitless opportunities to recreate with others.  I’ve learned that the most successful programs are driven by the voice of the residents and offer many events where people can socialize and make new connections while maintaining old ones.  Working in cooperation with residents and cultivating an environment that welcomes feedback, will provide the steam needed for the program to grow and diversify.  The benefits will be plenty!
    5. Go with the flow, Be flexible!  While working in the busy and self-paced environment of a skilled nursing facility, I learned to let go of the unrealistic expectations that things had to go perfectly, as planned.  There were so many factors that were out of my control from dealing with inclement weather that might threaten an event that was planned, to the times events were cancelled to prevent the spread of the flu.  There were also day to day distractions from fire alarms to staff shortages.  And when serving elders who struggled with dementia, it was imperative to stay highly attuned to the mood and emotional state of the residents as some activities had to be canned to prevent agitation and to avoid escalation.  These times taught me to “roll with it”.  I learned that the journey and the connection to others in the process were more important than the strict adherence to the scheduled event.  When events had to be changed due to safety  or other reasons, I learned to “let go” in the process and accept, come what may.  These lessons trickled into my personal life and have helped me adjust to change and be patient in the process.
    6. Recreation is a motivational force in treating illness, both mental and physical.  I learned through the observation of countless recreational pursuits and endeavors, that connecting to some entity other than one’s self is a powerful tool to restore and boost the health of someone struggling.  Endeavors such as gardening, reading, or interacting with pets act as a powerful agents of change in the transformation of a resident’s life, providing stimulation and purpose.  I often remind myself when I am in a slump to engage in the recreational pursuits that I enjoy.  Working with seniors revealed to me that at any stage of our life connection is an important part of what makes us happy and alive.    I was blessed to be a part of the process that helps facilitate opportunities for seniors to recreate and connect.

I’m sure I could list many other lessons that were equally significant, while some of what I learned is difficult to express in words.  The time I spent serving elders changed how I perceived the world.  I was able to touch “pieces” of living history and listen to stories shared by those who lived in very different times.  The voices of my residents will always remain a part of me, and will be valued and cherished for years to come.

Embracing the Mentally Ill in the Workplace: We Work Too!

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Love and work are the cornerstones of our humanness.

Sigmund Freud 

I’ve struggled the last 20 years while working and am in a period of regrouping at the moment.  I have been accommodated at work, have negotiated severances and settlements due to discriminatory practices, and have spent time becoming aware of the resources available to me.  I also have been a recipient of vocational rehabilitation services where I was able to have my tuition paid for to complete my MS degree in Recreation Therapy.  I’m not certain what my next work endeavor will be as right now I am currently recovering.  I’m an advocate for embracing the mentally ill in the workplace and am writing to hopefully help those who are also struggling. 

Living with a mental illness often, at one time or another, will impact work performance and perhaps, threaten viability.  Life is full of ups and downs, and sometimes a stressful event or situation, will cause decompensation even with medication and treatment compliance.  During these times, work relations and performance can be compromised in various ways, discussed below.  Each person struggling is unique with the challenges they face, and often will have ways they adapt and cope.  Some individuals may need to request accommodations from their employer.  In most cases, an individual with a disability has rights through the Americans with Disabilities Act (ADA) to receive accommodations while working, absent undue hardship on the employer.  Many people struggling are unaware of their rights and the responsibilities of the employer regarding workplace accommodations.  For example, the employer has the responsibility to approach and offer assistance with the accommodations process if they can visibly see a person struggling or the employee mentions that they are struggling due to their disability.  Also, if an individual with a disability requests accommodations the workplace is obligated to engage in an interactive dialogue regarding the implementation of accommodations in order to help the person remain employed and successful in their job.  The person with a disability must be qualified for their position and able to perform the job with or without accommodations in order to be eligible to receive accommodations and they will more than likely need documentation from a medical provider.

Being aware of the various ways people struggle, will hopefully cultivate sensitivity.  A mental illness is often revealed through one’s behavior, and co-workers & supervisors may mistakenly attribute symptoms as personality traits.  This is not only invalidating, but can increase symptoms by placing unrealistic demands on an individual suffering due to no fault of their own.  Remember, that each person who struggles is unique and is doing the best they can with an illness that they would rather not have.

The following are some of the ways an individual with a mental illness may struggle while working.  These are only a handful of examples and the list is not an extensive one

  1. Work Attendance:  The symptoms of a mental illness alone are often severe enough to cause an individual suffering to remain at home, in bed all day.  These symptoms can range from extreme fatigue, tearfulness, anxiety, and even feelings of derealization.  It is difficult to be fully present, when unable to focus and feel a part of your surroundings.  Attendance can also be affected as an episode can often exacerbate other illnesses an individual struggles with, for instance, migraines and IBS.  Often, an episode can cause insomnia or excessive sleep both of which can impact immunity.  People who do not suffer often downplay the severity of an episode and the multitude of symptoms it can cause for an individual that may result in absenteeism.
  2. Work Productivity: Due to a diminished ability to concentrate and attend to appropriate stimuli, mistakes can be made or work may not get completed.
  3. Work Relations: Many symptoms can cause strained relationships in the workplace.  Mood disorders, Borderline Personality Disorder, and ADHD all can cause impulsivity that can result in someone blurting something out that is perhaps inappropriate, at times.  When someone is episodic their perceptions may not be as clear which may cause misunderstandings resulting in conflicts.  Often times, because co-worker are unaware of the disorder due lack of disclosure, these symptoms are mischaracterized as someone’s personality, instead of attributing them to an illness.  Even with people knowing about the illness, stigma is so prevalent and illnesses so vastly misunderstood that people develop a negative view of the person suffering. This only serves to further alienate the individual often causing relapse or a continuation of symptoms.  Individuals who are suffering are often aware that they struggle and the act of hiding their symptoms for fear of not being accepted and embraced is another reason why symptoms increase.  Interpersonal conflict at work or at home is a trigger for an episode and being in an unwelcoming, hostile work environment is truly unhealthy for the individual suffering from a mental illness.
  4. Disclosure of the Illness: Many people choose not to disclose that they are suffering with a mental illness to an employer due to the prevalence of stigma and lack of awareness.  Most applications now will ask if you are able to do the job with or without accommodations and if you are requesting them at the present time.  Many people who struggle continue to do so privately for fear they will not get offered the job, especially when the job has not been landed yet.  Their thinking might be that they feel they can manage and want to develop rapport and a relationship, learn the culture, before feeling safe enough to disclose.  Even so disclosing in certain environments can be challenging, once the private information is disclosed, there isn’t a way to retract the information and people often are not sensitive, nor aware of the struggle of mental illness.  All of this aside, there are many people out there, working, receiving accommodations with success and feeling comfortable with those around them.  Many more have disclosed and have felt discriminated against and have lost jobs.  There may be a time during a severe episode where in order to save your job, it is best to disclose and request accommodations.  At this point, with an accommodations request on the table, if an employer refuses to work with you, you do have leverage.  The Equal Employment Opportunity Commission is the entity that will accept charges of discrimination and will investigate and potentially mediate for a resolution or provide a “right to sue” letter in order for a lawyer to be obtained.
  5. Work Environment: Another consideration for a person with a mental illness is if their disability is compatible with the environment.  Environments that are dark with little to no sunlight during long winters in the Northwestern part of the country, for example, may truly drain a person with a depressive disorder.  A loud, noisy office, constructed of cubicles, allowing for multiple disruptions during the day may be difficult for someone who struggles with ADHD disorder.  If a person is having a difficult time performing well due to the environment, there might be an opportunity to receive the accommodation of having an office near sunlight or one that is away from distraction absent undue hardship for the employer.
  6. Benefits/Paid Time Off: Because episodes are often unpredictable in both frequency and duration, it may be a wise idea to become aware of the policies and benefits surrounding paid leave.  Finding a company where benefits are ample, even if pay is less, may be better than struggling along from job to job that is not sustainable when suffering with an illness.

There are two resources that are helpful when navigating the accommodations process.  The Equal Employment Opportunity Commission (EEOC) which can answer questions related to your rights and the workplace’s responsibilities related to receiving workplace accommodations. https://www.eeoc.gov//   And, The Job Accommodations Network (JAN), an excellent resource that gives specific examples of workplace accommodations for people who are struggling. https://askjan.org

Many people who have a mental illness are not affected in the workplace, or it is infrequent and not severe enough to request accommodations while working.  But for those who are struggling the two sources can be an invaluable tool in navigating the accommodations process.  One can also apply for Vocational Rehabilitation services, which is a state-funded service that helps those with disabilities to be successful at work.  Often they provide training, support through funding to attend school, and can help with the accommodations process.  There are many resources out there for those struggling with employment, the largest challenge is the stigma and lack of knowledge relating to mental health issues.   Using our voices and sharing our struggling will break that barrier in time.   Thanks for reading!  I wish you much success in the navigation of the work world!  #WeWorkToo