The following is my story for the Digital Storytelling Series with the Mental Health and Developmental Disabilities National Training Center (https://www.mhddcenter.org). “The Mental Health and Developmental Disabilities (MHDD) National Training Center is a collaboration between the University Centers for Excellence in Developmental Disabilities at the University of Kentucky, University of Alaska Anchorage, and Utah State University”. Their objective is to improve the quality of services and supports for those living with a developmental disability. For more information about their organization visit: https://www.mhddcenter.org/about/.
In the podcast below, I discuss the multiple disabilities I live with and the challenges I have faced living with an “invisible disability”, both in employment and in accessing care. It is roughly 22 minutes, so listen at your leisure! My hope is that my story will resonate with you or someone you love who also struggles in a similar way.
My goal in sharing my story is to spread awareness and combat the stigma surrounding mental illness. Thank you for reading and feel free to share if you like.
A special thank you to Adam Potter, BA who interviewed me and edited my story and to the organization, MHDD, for the opportunity to share! I appreciate the work you do in increasing awareness and bringing a “voice” to our stories! Thank you!
A couple of weeks ago, I spent a few days engaged in a partial hospitalization program with the hope that I would gain a few more coping skills that would reduce the intensity of my PTSD and Bipolar 1 symptoms. The program actually ended up to be a more of a “one size fits all” program and it wasn’t truly beneficial to me. Without going into too many details, I had a couple of incidents of conflict where I felt disrespected by some of the employees there. This is not all that uncommon. It happens. Employees are just people in the end and some are not always sensitive, others might be experiencing a “bad day”, and still others are just there to “pick up a pay check”. The experience, however, got me to thinking about what I would like to say sometimes to those who treat me for my mental illness on my “worst days”. I decided to write an open letter to those who provide mental healthcare services, particularly those who do so in an inpatient setting or intensive outpatient program. The following sums up what I want those treating me to know. Maybe it will resonate with you as well.
Dear Mental Healthcare Provider,
To you, I am more than likely just another patient in a fast-paced program that has the goal of crisis-stabilization. I am one of many that you serve in a busy environment where safety is more than likely your primary concern. With the amount of people coming and going, it is to be expected that you might not ever truly know me. Between facilitating groups, completing necessary documentation, and other miscellaneous duties, there is very little time to actually connect to each patient in a meaningful and memorable way. In order to ensure safety, and a routine where programs run efficiently, the relationship between patient and provider is not one of equal power. Your role by it’s very nature, especially in an inpatient setting, is to enforce boundaries and rules to maintain the type of environment where people can receive the help they need in order to return to baseline. This dynamic, albeit necessary in ways, can be difficult for some of us to adapt to as it can feel not only constraining, but even oppressive, at times. In addition, the often sterile environment of some hospital settings and the loss of personal freedom, can seem disorienting and demoralizing to someone seeking help.
As a patient, I am coming to you at my worst, often in a place where I may not be in complete control of my impulses, moods, or perceptions. You see me when I am most vulnerable, often in the throes of an illness that I am doing my best to manage. Despite my efforts, there are times that the illness takes a hold, and I need a little help to return to my baseline. There is a lot of shame and embarrassment when I have to admit to myself and others that I need help to cope and manage the chronic illness of Bipolar 1 that occasionally rears it’s ugly head, robbing me of my time, joy, relationships, and even jobs.
When I walk through your doors or am brought in by an ambulance, I am instantly reminded of how powerless I am, at times, to this debilitating illness. All my possessions, like my purse and anything else I bring in with me to the hospital, gets stripped from me and I am asked to stand unclothed in a robe so that someone on staff can “search me”. I can remember being asked to do this each time I have been in inpatient, and yet, the actual occurrence of it I have conveniently blocked from my memory. As a victim of sexual assault, this is particularly dehumanizing and distressing for me. At one inpatient placement, I even was forced to wear a blue jumpsuit very similar to what is worn in a prison setting. The contents of my purse were dumped into a plastic bag. I felt violated, having my privacy breeched and felt nearly treated as if I were a criminal.
When you see me, I am coming to you to at my “worst” asking for your for help, but it can feel sometimes like I am part of a machine that doesn’t value or see my humanity. The first few days of treatment can feel somewhat numbing. Pink Floyd’s song: “Comfortably Numb”, comes to mind and the medications that I am pushed to take during an inpatient stay feels like what is conveyed in the lyrics: “just another pin prick” and “there will be no more, “Ahhahhhaaa, But you might feel a little sick”. Often the first day or two, I feel like just “another brick in the wall”, numb and disoriented, wishing I were anywhere else but back in this spot, vulnerable and raw.
When I walk through the hospital doors asking for your help, I carry with me 32 years of experience as a consumer of mental health services. I also am informed and aware of my patient rights. I may be struggling, but just in the past week or so, I was at work serving clientele as a social worker. I was sick and struggling, but holding it all together. I came to you because I had the insight and awareness to acknowledge that I need the help. I want to be seen as someone who is currently struggling, but respected as an individual who on most days is competent and insightful. Ultimately, I want to be seen as an individual who has many strengths, not just a mental illness you are treating.
Even on my worst days, when I am receiving care, I want to feel that I have a sense of agency over my healthcare. I want you to ask for my input and respect my right to decline treatment. Sometimes, it can take time for me to research and decide what I feel is best for my health. I’ve had nurses “talk over me”, even insist I was delusional, because I wouldn’t take the medications that were initially ordered by the prescribing doctor at the hospital. I once even had a nurse threaten to “tie me up in a rubber room and inject me with my medications” if I continued to refuse. Sadly, due to the stigma surrounding my mental illness I know if I had reported this incident I would have not be seen as credible. Yet, many of us in treatment have endured abuses or threats like the one above.
Just because I live with a mental illness and am requesting help, does not mean that I am incapable, even while hospitalized, of making informed choices. Had I taken the medications prescribed by the doctor during some of my stays, it would have been too much for me. I know my body and I also know my rights. I have the right to decline medications. I earnestly am asking you to educate me, provide me with the information about the medication you are prescribing, allow me to research it, and even provide alternatives. Wouldn’t you want the same for yourself if hospitalized?
I realize that providers are just people and they make mistakes. I’ve had to remind a few of my providers that I couldn’t take certain medications due to drug interactions. Sometimes, they are too busy to look up a medication or have forgotten that an interaction exists. I realize providers are not walking encyclopedias and their knowledge may be limited. And I also understand that most people willingly trust what the doctor “orders”. I am someone who has had a few truly negative and scary experiences while taking medications and I am hesitant to start any new drug. Please give me the time I need so that I will feel comfortable trying another new medication. And please don’t take it personally if I question a medication you prescribe or even decline it. It is my body and I will do what I feel is safe and comfortable for me.
I also again want to remind you that I am at my worst when I come to you. I am sick, vulnerable, and often raw. I again have to open up and tell a complete stranger things about myself that might be hard, stressful, and downright painful. I feel exhausted and depressed after having to explain my history and symptoms to, yet again, another individual that, in a few days, I will never see again. The mere thought of disclosing and repeating my history once again can send me into panic and is nauseating for me. To you, I might be the new admit going to bed 107 that you have to quickly assess before the next patient arrives. But, for me, the whole experience feels dehumanizing and it often makes me feel powerless and small.
I sit in the chair slumped over across from you, often sharing the things I don’t want to share with anyone. So, please excuse me if I appear on edge, easily angered, defensive, or irritated. For me, I am at the beginning of a stay where I will be thrust into groups with strangers, sleeping in a room on an uncomfortable bed with a roommate I do not know, and told when to eat and where I need to be for the next few days. Nothing feels normal at the moment.
For you, it is just another day at work and you’ll be home to your creature comforts soon enough. Your demeanor and approach with me can set me at ease and even bring a faint smile to my face, or it can make me feel ashamed, angered, or numb. I understand you are human as well, but I hope you are able to understand that I truly am at my “worst” and please be sensitive to that fact. It will make such a huge difference in my stay if you do.
During my stay with you, I will sit in groups and listen to some of the same approaches and interventions that have been introduced to me before. Initially, I may feel, on a certain level, that for me to wind up here again, I must of failed in some way. There is a lot of shame, grief, and even rage, that I am feeling. I wonder to myself: How did I wind up here again? I long for the group that tells me I am OKAY, despite my struggle of living with a mental illness. I appreciate the rare facilitator that starts the group out telling us that our chronic illnesses are nothing to be ashamed of and that we are not here because we “behaved badly” or that we somehow caused our illness. There is no shame in struggling. Many people “behave poorly” and have unhealthy habits, but do not land in an inpatient psychiatric setting requiring care. A mental illness is a true illness and if unhealthy habits were responsible for the struggle, many more people would carry a diagnosis. Please remember that I have an illness, not a “behavior issue” and that I do truly try to manage it.
I will also add while I am at it, that I wish I had a private room and the hospital would separate the men from women, particularly not allowing them to sleep on the same halls. This was distressing and distracting for me. I would also like for the environment to be less sterile and more homelike and for groups to be designed with functioning level in mind. Hey, I can have a wish list, right? Some groups are difficult for me to sit through because the information is not new to me.
On my worst days, when I find myself in an inpatient or intensive outpatient setting, please treat me exactly as you would like to be treated. I can respect certain safety measures as I am aware that they protect me as well as others in the program. And yet, please don’t talk “over me”, or refuse to accept my input. I would prefer you not ransack my purse or insist I dress in a blue suit. I also want to be seen as an individual.
And, please, if I have a “meltdown” or an angry outburst and I later come to you to share why I was upset or I wish to apologize, it would be nice if you accepted my effort to resolve things graciously. There have been incidents in the past where I have tried to smooth things over and it was met with stonewalling and a complete disregard for my struggle. Please remember if I am in the hospital for my mood disorder, I might not have the best control over myself. If I did, I would not need to be in an inpatient setting. Like others, there is a lot of shame that I experience during times when I lose dignity and become verbally abusive when upset. I genuinely am not proud of these moments and if I am making the effort with you to apologize, my hope is as, a professional, you will at a minimum try to acknowledge that not only am I “at my worst”, but I’m also in a position where my freedom and power has been stripped from me. The inpatient setting alone is abnormal and adapting to it can be a challenge for anyone. Often patients escalate as a result of responding to a system that is inherently dehumanizing, at times.
I feel so much needs to change regarding the structure of inpatient stays. So many of the patients need longer stays with additional services to truly stabilize. The current system is overwhelmed, rushed, and often the stay is too short to ensure a safe discharge. More time is needed to determine if the medication changes made are indeed actually effective. In the past, stays not only were longer, but the care was more individualized. I remember in the 1990s not only receiving a variety of physical and mental tests and assessments, but I also met a therapist 1-2 times a week. My recent hospital stays were too brief to actually ensure a correct diagnosis or to provide patient-centered care. Maybe it is too much to ask that a mental illness, be treated like a physical one? A holistic approach would benefit patients to ensure that there isn’t any other reason for their symptoms. I shudder to think about the accuracy rate of determining one’s diagnosis or the safety of the discharge when stays are often too short to truly know the patient’s needs. This causes unnecessary recidivism, but again I guess insurance companies prefer to take that “gamble”. Sadly, lives are lost doing so. And for many, who suffer for years without adequate care, their quality of life is greatly diminished. This can lead to poor outcomes for some such as incarceration, homelessness, or other health complications from lack of self-care.
My hope is that one day those who survey the hospitals to renew their accreditation involve a board of individuals who actually live with a mental illness who have been inpatient. Please consider our voices in the process. Many of us have ideas for how we wish to be treated and what we need for the experience to be better.
I will be the first to admit, I don’t always show my better side while in treatment. It is a demoralizing experience where as an independent, educated, and high functioning individual, I feel my rights are stripped from me. If I am unlucky, there might be a few staff members that can make the experience intolerable. I have experienced some truly effective and good providers in the mental health system and to those people, I am eternally grateful. But, the few “bad apples” can truly damage an individual who is already struggling, causing them to not ask for help again. That is why the quality of services matter so much to me. It can save a life. And it can enhance the quality of life for so many struggling.
Thanks again for taking the time to read my thoughts and concerns. It is just my perspective from the position of a patient being served in our current mental healthcare system.
That’s me above, and my pup, Gracie. This picture was taken nearly 5 years ago while I was still working. I was living in Seattle, WA at the time, and working in a long term facility as a recreation therapist (CTRS). And, trust me, even while donning a huge smile, I was severely anxious and struggling!
Since then, I’ve been approved for SSDI and have been focusing on rebuilding my health, one day at a time. My hope is to live gracefully with my illnesses of: Bipolar I, PTSD, ADHD, OCD, and PMDD. I have learned to accept my illness and am acquiring new skills and approaches to cope more effectively.
The suffering I’ve endure related to my mental illness has been amplified by the stigma and the shame surrounding it. It has taken me years to separate myself from the symptoms that my illness has caused and the stigma that is perpetuated by those who lack the awareness and sensitivity to understand my struggle. The shame I feel from having an illness has significantly decreased over time, as I have worked to cultivate acceptance and compassion for my struggle.
The “stigma and shame” surrounding the “suffering” can, at times, exacerbate the severity of my illness. It has taken years of healing to separate the “suffering” from the “stigma” and the “shame” that often accompanies mental illness. I share in the following paragraphs how the suffering, which is often biological for me, has been impacted by the stigma I’ve faced, which inadvertently causes shame. Being able to see these as independent from one another, has allowed me to move further along in my healing process.
What do I mean by my “suffering”?
My “suffering” is my life-long struggle with an illness that causes chemical changes in my brain that are often difficult for me to manage and control. I never chose to be mentally ill, not for a certain time period, or even for a day! In fact, my illness began when I was in the “prime” of my life! I was captain and MVP of the swim team, had a leading role in the school musical, and was well supported by my friends and church. Like many others who struggle, I was active and involved prior to the onset of my mental illness. My illness began around my sophomore year, and it crept along, gaining momentum, until one day it was painfully obvious to others that something was just “not right”. In my case, my struggle presented itself as a combination of symptoms that included: obsessive & intrusive thoughts, delusions, anxiety, panic attacks, depression, and disassociation. I was acutely aware that my thought processes were somewhat “off” and I decided, on my own, to seek treatment. It was unsettling to me at the time and caused me much distress.
I have often made the comparison that my “suffering” is much like having an onslaught of bad “side effects” to a prescribed medication, except that the symptoms are often more severe than that of side effects and the onset and duration of symptoms can be unpredictable and uncertain. For example, too much caffeine may cause some to experience symptoms comparable to mild mania in that they may be: edgy, anxious, irritable, energetic, even euphoric, etc. Their mind might even race and they may feel overly optimistic about what they can accomplish. 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.
Thus, my “suffering” is a lot like clipping along and doing “ok” and then being suddenly blindsided by a cycle of unwanted “side effects” in which there is no escape. Sounds like a personal hell, right? It is. This is the suffering that most people (unless they experience it) do not understand, while some others do not even acknowledge. Medication and other approaches (mediation, therapy, etc.) can sometimes alleviate or decrease symptoms, but many of us suffer for years, on and off, endlessly trying to “escape” a chemical imbalance that causes the illness.
Unfortunately, because mental illness is often misunderstood, I’ve had to “suffer” in 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. I can remember being released from my first hospital stay and friends laughing at me or telling me I just need to “snap out of it”. I even had a counselor in college who told me, I needed to “pull my boots straps up, and try harder”. Obviously, this caused me immense shame as I blamed myself when I struggled to control my moods or manage my level of anxiety. This compounded my anxiety and depression as I felt ostracized from others and would resort to “self-loathing” when my illness became episodic and I couldn’t “snap out of it”. I often blamed myself and became more alienated. I was diagnosed before the internet was in existence and couldn’t reach out to “social media” or on-line groups for support.
Often people who have a mental illness feel that they must hide their struggle from the workplace, for fear of retaliation. I remember after being initially diagnosed in the early 90’s with Bipolar 1, I was told to “hide” my diagnosis from others, particularly in the workplace. This only served to ramp up my anxiety as I struggled to keep everything “sucked in” and hidden from view. I have even lost jobs and experienced discrimination in the workplace when requesting help in the form of accommodations. My struggle was often viewed as not credible and I was seen as a “troublemaker” or an “attention seeker”.
The stigma surrounding those struggling with a psychiatric disorder, often prevents people getting help in the workplace and seeking treatment. The effects of stigma can be devastating and can mean job losses and access to adequate 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 stigma can lead to a deep level of shame. Without others having the awareness and/or sensitivity of my illness, of which I felt I had to “hide”, there were times I was misunderstood. I might have been seen as haughty or short when I had to disappear quickly to manage an escalating panic attack. I may have been viewed as uninterested or unmotivated on a day when I was struggling with my depression. My symptoms were often misinterpreted as my personality, and this caused me conflicts with others. In time, I could see clearly that my illness had robbed me of my potential in the workplace, but NOT of my talent, motivation, experience, or passion. It was often how I decompensated during times of stress, due to my illness, that wrecked me. And my frantic efforts to to feign “normalcy” only exacerbated things, until I just “quit” abruptly, or began missing too much work.
These lived experiences of struggling, experiencing stigma, and then feeling shame, ultimately caused me to respect my illness, for what it truly is: a devastating biological illness that affects my mood and perceptions which is often visibly seen through my behaviors. I began to see the distinction between myself, when I am suffering, and myself when I am not. I started to challenge myself in the midst of my suffering to let go of the shame that I had relating to my behavior when sick. I could see that focusing on the negative behaviors that arise during an episode, often served to keep me hooked in a cycle of shame and regret. Instead, I decided to give the illness the respect it deserved and I spent 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 when it does, I have decided to forgive myself, instead of lamenting the mistakes made when chained against my will, and suffering with a serious mental illness. Now, I get busy working to “get ahead” of the next episode. I’ve decided to be like a hunter and become skilled at tracking it down, intercepting it, hopefully before it escalates too much. And even, if I become ill, and things “get messy”, I quickly return to practicing self compassion and respecting the chronic mental illness that I live with that takes immense effort to manage effectively.
I’ve learned through a lot of years of tears and immense pain, that I don’t have to be ashamed anymore. I also acknowledge that many people are going to misunderstand my illness and there is only so much I can do to educate and inform others. My hope is through writing I can help others better understand what it has been like struggling now for nearly 32 years with a severe and persistent mental illness. And, I am immensely proud of the courage and persistence I espouse, despite the often insurmountable odds I’ve faced living in a world that is still sometimes not accepting or sensitive to my struggle. I hope this helps others. If it does, I am even more grateful for what I’ve lived through and survived.
It’s my birthday. I haven’t been writing a lot lately because I have been going through a difficult time. Soon after making the move to California, I developed an interesting phobia, phagophobia, which is the fear of swallowing. I am still in the process of going through certain tests to “rule out” any physical reasons for my difficulty swallowing and I’ve been waiting weeks for my last test to be approved by my insurance company and then scheduled.
Meanwhile, I have lost a lot of weight as I struggle each day to meet my basic caloric needs in order to maintain. I’ve lost 47 pounds in roughly two and a half months to be exact. This sucks. It sucks because if someone had told me prior to this that I would develop a fear around eating, I would have laughed in their face, more than likely saying “I wish”. I have always struggled with being overweight and I love food. But, here I sit today on my birthday doing my best to force pancakes down as well as another ensure supplement as to not lose any more weight.
The reason I wanted to write about this today, on my birthday, is to honor not only my struggle with my mental health, but also to honor anyone else out there who is struggling as well. The reality is many of us suffer alone as others either are uncertain how to support us or they lack the understanding and sometimes the sensitivity to be helpful. In fact, many people, by being impatient and demanding, cause more damage and end up impeding the healing process.
I am 47 today. I look back at the years I’ve been on this earth and I acknowledge that I have always struggled. I was diagnosed ADHD in 1978 during a time when the diagnosis was uncommon. Following that diagnosis in my teen years were the diagnoses: OCD, Bipolar 1, GAD, Panic Disorder, Schizoaffective (at one point), BPD (at another point), PMDD, and replacing BPD later was the diagnosis C-PTSD (this occurred in the past 5 years or so). I would say out of the above, my greatest struggle is with fear and anxiety as it is pervasive. My OCD is primarily somatic and I go through periods where I ruminate about one thing for awhile, for instance my breathing or heartbeat, etc. and will eventually “wear it out” until some other fear takes it place. Most of my fears have some grounding in reality and that is why they seem so powerful, but the amount of attention and focus given to the fear is what makes it irrational. I will often have ways of managing those fears by compulsions that I feel make me safer on some level. Those close to me are often confused by my thoughts and behavior, and admittedly, I am as well. I personally cannot “think” my way out of the web I have trapped myself so tightly within and it is beyond frustrating. Oh my GOD! How I have tried! From praying to meditation… to exercise to therapy… I am 47 years old today and still suffering. Ugh! I often wonder if I will ever be completely free. I will not give up trying.
When I think of my current suffering, where I have lost nearly fifty pounds, I remind myself again to respect my illness. Often, people dismiss mental illness by saying, “it’s all in your head”.The medical field downplays mental health by nearly expressing relief when it is nothing “physical”. But, I know better. Sometimes, I actually long for a physical diagnosis. Not anything serious, of course not, but something I can manage with a pill or have corrected by a surgery. I know how dangerous my own mind can be and am often more afraid of it than some structural entity that can be fixed with a surgery or an illness that is relatively easy to manage. I expect my last test for the swallowing to be within normal range and although that brings a certain amount of relief, it also brings a certain amount of dread, as I know that it will be me fighting alone to feel comfortable eating again. I hope this one “wears out’ more quickly than the others. I really do not have too much more weight that I can lose.
And so for my birthday, I wanted to honor your struggle. If it is physical in nature, I honor it as well. For some of us, we are fighting a silent war. We might not be able to fully grasp why we are stuck right now. We might be paralyzed in fear or anger, unable to move forward and those around us are becoming impatient. It appears easy to those on the outside to just “get over it already”, but for whatever reason we simply can’t. Sometimes we are able to give ourselves the same rational reasons that others provide, and yet, we are still unable to move. It’s okay. Cry it out. Yet, accept the struggle. Make peace with it.
I have been struggling for nearly three months with the ability to comfortably swallow. I haven’t had my favorite foods and there have been times I have been really hungry. So much so, I hurt. I have literally sat alone in my room crying while I stare at a plate full of uneaten food. Still, I was unable to push through and make myself it. I would use all the reasons loved ones had given me and many more that they did not come up with and still, my fear was greater. And so I am choosing, on my birthday, to honor the struggle. To make friends with it. To talk to it. To see what it has to say.
Mostly, it tells me that I am sad. That I wish I were closer to my family. That I wish I were more successful and able to work. That I wish my past relationship had worked out as I had dreamed and that we were happily married. Or that I had children and a family of my own. It tells me that my fear and inability to swallow is just a metaphor of my grief that is screaming: “No More! I cannot ‘swallow’ anymore!”
And, perhaps it is telling me to change. Often, we become paralyzed, I believe, so that we can change course. I’ve not been laughing enough, nor have I been connecting with the people that I love or participating in the leisure I most enjoy enough. Fear and paralysis has taken hold during the grieving process and perhaps this final “wake-up call” is telling me that it is time to not only perceive differently, but to act differently. I admit, I was “stuck” and have been “stuck” trying to swallow the “bitter pill” that life had offered me. In ways, my grief more than likely caused a psychogenic dysphagia: a fear of swallowing.
I will continue to go forward, swallowing as much as I can, and pacing myself as I continually learn to better cope. For my birthday weekend, I will be camping at a nice beach here on the California Coast. I plan to try a little harder to listen to the rhythm of the ocean, reminding me that as each wave rises, crests, and falls it breaks and collapses back into the ocean, surrendering and releasing….. letting go. In this way, I won’t get so hung up on a single wave or “thought” and give it so much power. I look forward to the sun and sand as well as playing in the waves for awhile. Although, I probably won’t partake in any BBQs, I will do my best to relax and honor where I am at right now at this point in my lifetime. I am 47. For all the fear that I have lived in, I have made it this far and it is something to celebrate. I want to relax and just be happy that I am here, in the moment for now, taking in the sights, smells, and sounds of the ocean.
Can we please stop using the word, “Recovery” when talking about mental illness? The use of this word for those who struggle their entire life with a mental illness is damaging. This one small, seemingly insignificant word communicates to others that healing from a mental illness is possible if you only “try hard enough”. “Recovery” assumes that the one suffering has the possibility to completely “regain control” of their life if they only take accountability for their illness. It’s a very slippery and stigmatizing slope to place the burden of one’s illness on the individual who suffers to absolutely no fault of their own. While I can agree that the healing process requires an individual to come to terms with their illness and manage it, I do not agree with the sentiment that others who are struggling just haven’t “tried hard enough” to reach recovery. Some of those who struggle alongside of us will not recover, ever. Some will die due to this disease. And there are some, who actually will heal enough to remain in remission. We cannot assume that everyone that suffers is able to reach stability and insisting that they can do so only serves to shame them.
The definition of the word recovery implies that one is virtually cured:
Recovery:“a return to a normal state of health, mind, or strength”. OR
“The action or process of regaining possession or control of something stolen or lost”.
I understand why people are drawn to this word and use it instead of “coping or managing”. Healing is an individual process and it is something that cultivates pride and mastery. It takes immense time and work to heal oneself. I am engaged in the process as we speak and it has been extremely challenging and difficult, but rewarding. Even on my best days, I do not feel I have recovered: “returning to a normal state of health, mind, or strength”. I have struggled for nearly 30 years and I honestly do not feel I will ever be completely recovered. Some are in the throws of persistent and severe mental illness, with psychotic episodes that are uncontrollable. Although, I do not experience psychosis, I know how it feels to be dropped back down to earth, disoriented and bewildered from an episode of mania that kidnapped me once again. Was I too blame? Did I just not try hard enough?
What I can tell you is that Bipolar illness crept in slowly and stealthily in my late teen years, stealing my laughter, my potential, and my clarity. I was actually on top my game physically, an athlete. I was sociable and friendly, a lead in the school musical. I had been accepted into college and was not involved in drugs or even in a sexual relationship. I was NORMAL and my illness ROBBED me of my care free and happy lifestyle. When you preach “recovery” and the role I must have in it to stay healthy and stable, it communicates on some level that I caused the instability. I was simply living my life and it was hijacked and destroyed by an illness that I did not ask for, nor did I want. I prayed for “recovery’ and complete remission. And in the past 30 years of my struggle there were years where I was more stable and years where the beast of mental illness rose again, rendering me disabled and destitute. The imbalance in my brain is not always controlled by me. Therefore, I choose to embrace the illness and struggle “as is” and “manage and cope” as best as possible.
Here is me the year right before I became very sick on the Summer swim team:
I feel recovery in the incidence of mental illness is shaming and stigmatizing. Those who have a choice to remain away from what is causing their illness, such as in substance abuse, perhaps can talk about being in recovery. Their actions and their commitment to their health, has restored it. With mental illness however, a person can be choosing the right behaviors and still experience a damaging episode. And sadly the first thing people will say is: “Were you taking your meds, Were you sleeping, Were you…?” And, guess what? They might not have, but often times they did not choose to alter their behavior. Many times behavior changes as a result of perceptions and memory being altered as a result of the illness and then it spirals from there. I cannot count the amount of times I “skip” a dose of my Lithium because I simply cannot recall if I took it, even if I am marking it down or have a pill box. The first signs of my illness, I have learned over time, is disorganization and memory problems. People have told me I look and sound different when I am manic. So much is altered that telling me I should have done this or that is kinda fruitless when you truly understand what is occurring. And I often don’t know that I am going into an episode until I “fall out of it”, regaining clarity once again. But, somehow when my brain goes awry, I am supposed to stick to certain coping mechanisms and ultimately there is a lot of self-loathing that occurs because I cannot do so. My MS degree means nothing when I can’t even accomplish basic functions because of my mania or depression. And this has been an on-going struggle for years.
And so, I had a choice to make: to accept my faulty-wired brain or beat myself up and “try harder”. I am choosing to embrace myself as I am and do my best to manage and cope. And so, to all of you who feel you may never “make it” and “recover”, it’s OK. My advice is to do your best and if you have a day or week or even a month where you completely fall apart, accept it. Surround yourself around those who accept you the way you are. This moment right now is what truly matters and you may or may not make it across some made up finish line to “recovery’. No matter where you are at in the process, embrace it and love yourself fiercely and completely, regardless.
I am coping and managing my illness as best as possible. There is NO finish line. There is just myself and my experiences and what I know. And I know my struggle and how hard it is. Embrace you, because you are “that special”, “that amazing”, and “that worthy”.
I’ve been restless, at times, desperately desiring to be completely satiated, longing for validation and visibility.
I waited a whole decade consumed by the desire to be passionately loved. I gave every ounce of my being to this fruitless pursuit, determined that one day it would yield the commitment desired from this individual. The commitment never came. In fact, the more I pursued and pushed, the more I lost myself. Losing him was letting go of the long held belief that I wasn’t good enough.
I waited for several years for a sincere apology and a gesture from a family member that communicated reconciliation was desired. I waited for certain family members to heal and recover from their addiction enough so that they could not only care about themselves, but they also could care about and connect with me. I waited years while we argued, knowing that the arguing was all that I had left. There was no true desire from them to know me or connect with me. I waited for years, grieving, often raging and demanding change. I only ended up alone and alienated. Little has changed in their behavior which has landed some of them permanently disabled, while others, potentially facing jail. I still am grieving, but I have given up on “waiting”.
I waited many years for my career to “take off”. I waited for someone out there to reward my hard work, experiences, education, etc. In the last decade, my work potential has been overshadowed by my disability of Bipolar 1, ADHD, and C-PTSD. Working with a disability complicated things and has temporarily placed my career goals “on hold”. I am currently not employed. I waited to land that “awesome job” and when I did finally achieve that goal, it was quickly thwarted by my disability. I got sick with several respiratory illnesses and was prescribed prednisone, a steroid, that inevitably caused a mania. I requested accommodations and then took a medical leave. When I returned from the medical leave, which was actually encouraged by my supervisor, I was terminated from my job without the opportunity to work with accommodations in place. I was devastated and have still not bounced back from the discrimination I endured. I waited for years to find the job that would provide security and pay well and as soon as I found it, I lost it.
I waited many years to be free from anxiety and depression. I thought perhaps a combination of therapy and medications would one day set me free from my struggle. I am still waiting on my complete freedom from the symptoms I have endured related to my disability. I am still not completely free from certain habits and symptoms stemming from trauma that I have experienced in this lifetime.
I have had an unraveling of sorts in this lifetime: failed marriage, failed career, failed engagement, a loss of family, a loss of employment, and the inability to have children. I have lived with a mental illness that often has stripped me of my dignity and distanced me from others. I isolate a lot because interacting with others can be difficult especially if I am working. When I did work, it took all my energy, leaving me feeling depleted. It was during these times I really needed the safety net and support of family and a solid relationship. Instead, as I struggled to maintain work I was often drained further by having to fight for love from my family and my partner. I was fortunate to have the support of my ex-spouse in the process and my mother. Still yet, I often felt overwhelmed and alone. I had waited a very long time for something to “work out” and I felt “let down” by the world. I was deeply depressed and this went on for a very long time.
In losing so much, I discovered that I was left with me. Over time I have let go of what was making me “hard” and I am now peeling off the layers that have hardened me. I’m exposing my fleshy fruit, my essence raw and vulnerable.
I don’t currently have a job. I’m single and living with my ex-spouse for support. I don’t have a home. My bank account is empty. My family relations are strained and I primarily am only connected to my mother, my step-father has never been too involved and my sister and her adult kids are all estranged from me due to the conflicts and chaos that addiction has caused. My ex-spouse is a great friend and support. And, I have my dog, Gracie, who is very loving.
Losing so much is teaching me to be more humble and to appreciate what I do have, not just in possessions, but in talents, skills, and experiences. I’ve been stripped from what I felt was needed to feel valued and visible. I’m learning to define my self worth, not by the expectations placed from society, but more on the intangibles that define me.
I waited for years for someone or something to “show up” for me. I watched while others got married, had careers, and shared photos of their cute kids on Facebook. In ways, everything I had longed for was perpetually being displayed by others. I wasn’t jealous of their good fortune, but I often wondered why things had not worked out for me. In the end, it wasn’t in the cards. This is what I am learning to accept and in doing so I am slowly opening up the world that is mine. I am no longer grieving what I never had or lost. Instead, I am accepting the hand I was dealt, with curiosity, and am ready to discover this world embracing my reality wholeheartedly. I have always acknowledged some of the blessings that being single with no children has afforded, like ample time to travel and engage in leisure pursuits that I enjoy.
I have decided I am tired of “waiting”. I am letting go of all the people and things that were keeping me stuck. I am showing up for myself. I’m determined to awaken to the present and accept with grace and gratitude each moment. I sincerely want to fill the space that is mine.
It’s odd to think that in losing so much, that I am actually finding myself. This fills me with excitement and joy because I know it is what I have been searching for my entire life. I know intuitively that this is the greatest gift with the most returns. Investing in myself will only yield positive results.
I have so much more work to do, but now I have the right person in the driver seat, ME!! I’m not waiting around for others to call the shots or to determine my emotional state for the day. I genuinely want to be happy and want to be responsible for my happiness. I realize I will struggle from time to time, but healing is happening and I am grateful!!
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),
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!
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.
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.
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.
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.
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.
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.
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’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.