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!
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.
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!!
I’ve been on an endless quest of forgiveness and self love. I keep getting tripped by various events that suck me into old habits and patterns. I reach clarity only to be pulled back into the fog where I am wounded, raging, and ruminating. To be fair, I am navigating some fairly choppy waters at the moment. The boat is rocking like mad and I have become paralyzed, at times, or am frantically fighting, completely entangled and entrapped.
Initially, I start off swinging, hurling insults here and there, mostly screaming into wide, empty spaces. I have every reason to be hurt and even fearful, but I keep asking myself: “What happen to my promise to disengage?” This on going struggle has been nearly impossible to completely let go of because it involves family members that I love, but continually lose. I’m on an emotional rollercoaster of peaks and valleys that include: hope, rage, self-loathing, forgiveness, despair, anxiety, fear, and loneliness. I would give anything for everyone involved to abandon the rollercoaster and never ride it again. God, I am tired.
After all the mistakes I have made again, I have decided to write a list here to remind me what to do and not do in crisis. Writing may help me navigate more safely through the next storm, a Lighthouse List to guide me.
My Lighthouse List
Do not stop breathing. Seems easy enough, right? I stopped breathing earlier today and now I am having anxiety and panic which make it even more challenging to focus and respond. Do not stop breathing, remember to take a time out to breath and focus. You will be more effective as a result of doing so.
Stop and ask these three questions before getting involved.Am I in an emotional state? Is it my responsibility? If I do act, is it realistic for me to expect that it will yield a favorable result? For the record, I have never once stopped to ask these questions and I believe if I had they may have allowed me to be more skillful.
If in an emotional state, do something active before responding.I tend to be a highly impulsive individual due to ADHD and Bipolar 1. I cannot count the amount of times I have gone overboard in a rage, when angry, and regretted it later. It has caused a lot of self-loathing. Often the anger is justified, the response is not. I am going to try the next time I am truly triggered to immediately engage in physical activity of some sort in order to decrease the intensity of my emotions.
If it is not my responsibility to act, step back until advice or help is solicited.This can be complex, at times, given the circumstances. But, in general if you are not the one responsible for remedying the situation, then it is best distance yourself. Provide some help and advice if you like provided they are open to receiving it, but keep your distance unless it is requested. This sounds like common sense, but in a crisis, situations emerge that often challenge this reasoning. Emotions are running high making it difficult to execute logically. I believe having this reminder will help in various situations.
If you are uncertain that your actions will yield a desired outcome, wait to act until you are more certain.I think this is a good strategy to have when deciding wether or not to act in a crisis situation. There are times I am so fearful or angry I react without weighing the pros and cons of my actions. Keeping the end result in mind will help me navigate more safely.
Take time out to recharge and take care of you.Even in the midst of a very difficult family situation, try to take some time out for yourself to center. Take a bath (you have to anyway!) or a walk and during those times try and take a time out to give yourself a rest from the chaos and emotional upheaval.
Be mindful and remain in the present moment. Often crisis and trauma will bring us right back into the past and feelings will flood and overwhelm you, making it difficult to act in logical ways. Find time to center yourself and remain grounded in the present as to not bring past habits into the situation at hand.
This is a good list to start with as I navigate the choppy seas over the next few weeks. Maybe I can do better from this point forward. The last few years have been extremely difficult and I have reason to be upset and even devastated. I am going to be starting Dialectical Behavioral Therapy soon and am excited to learn new ways to manage my emotional state and behavior in times of crisis. Until then, I continue to learn from my mistakes and use the above list. I am hopeful that the worst is behind me as I have been keeping my eyes wide open and when mistakes are made, I make efforts to question my behaviors and intention.
In the past, I would not have been able to quickly pinpoint mistakes made. I am growing. I am trying to be patient with the process. Healing is messy and chaotic, at times, but exciting and inspiring as well. Hopeful and happy to be on the path. It feels like home to me.
I won’t stay stuck here forever. It’s a dark and suffocating place.
All of us have areas of our life that make us feel unworthy and unloved. Some of those areas go back to a time when our esteem was first forming. For some of us, we were stunted by abuse or neglect and now are left trying to pick up the pieces that were not given to us. This is extremely hard work. I wanted to write this piece because we collectively can benefit from hearing other people’s pain to learn that we truly are not alone.
There is no shame in acknowledging that certain tools were left, often unintentionally, out of our toolbox. Many of us struggling, to no fault of our own, did not have a solid foundation in our formative years. At times, our needs may have been overlooked resulting in poor coping mechanism and difficulty setting and maintaining boundaries.
As a result of a difficult past, I developed a host of ineffective coping strategies I utilized to try and to get my needs met. I feel that those who have hurt me, often did so unintentionally, often without awareness of their own issues or mine. Perhaps they would have been more empathetic, had I been coping more effectively at the time and communicated my needs in less abrasive ways. Those who harmed me with intention often had their own issues of self worth. I feel sharing has the power to set us free from the patterns that have become deeply entrenched in our minds and thus reflected in our behavioral patterns. Often these patterns of behavior mirror back to us what we believe about ourselves and further imprison us, committing us to an false identity that leads to the self-fulfilling prophesy of failure, resulting in low self esteem.
Clearing a path for your authentic self to emerge is difficult work that is cumbersome, requiring courage and persistence. A lot of this work is not linear, and it can not be completed in a vacuum. Meaning as you heal you often are still in the same environment and around the same people who will challenge the healing process, skeptical of the changes you are making. This may even mean you have to distance yourself from certain people who are not willing to accept the person you are becoming. Often, healing is brutally messy and even painful. But, it is a process that I believe to be worth the endeavor, despite the chaos that can ensue for a few years while things adjust.
This has been an excruitiatingly painful year for me. In this year, I have faced discrimination in the workplace and lost my job. I also cut ties and went “No Contact” with my Narcissistic after having a very tumultuous and abusive relationship with him for a decade. And, lastly, it is the year that I was scapegoated by my family and blamed for the turmoil and divisiveness that was stemming from my sister’s struggle with addiction. All of these invalidating experiences, where I was gaslighted, devalued, and discarded, resulted in a very unstable time for me. I relapsed with my Bipolar illness and became suicidal for the majority of the year. I was very hurt and enraged and spent the year fighting with my Mom and sister trying to salvage the relationship, but also determined to defend my reality in the process. This pain lead me to time spent questioning my reality, my motives, and my intentions. This process lead me to links in my past, shedding light on places of hurt that had stunted my growth, causing self-doubt and despair. Being so vulnerable and sharing openly, I feel, only will serve to diminish the power these myths have over me that claim: “I am not good or worthy”. And it is possible that my reflections will resonate with someone along the path of healing, and together we will heal.
In my formative years, there were some remarkable events that caused me significant pain, influencing my world view and challenging my self esteem. One of these events being when my biological father released his rights to me, not wanting to know me or have me as part of his life. I won’t get into the rationale as to why this occurred. I was too young to remember the event, but do recall the years in my life of wishing I had an affectionate father who made me feel safe, secure, and valued. This one event had impact on my self esteem and worth that followed me throughout my life.
At age four, I was molested which left me feeling powerless, invisible, and ashamed. I was not considered in that event, just a little girl whose only purpose was to provide pleasure for the perpetrator. My voice was muted and I was devalued. I absorbed the shame through this event and when I was much older, in my teen years, I felt very ashamed and guilty for having normal thoughts and feelings about boys. I was heavy for many years in order to remain invisible to men and feel safe in my skin. This event impacted me greatly and as a result later in life, I married a gay man to avoid feeling violated. I did not know for certain he was gay prior to marrying him, I just knew that I did not feel threatened by him in any way. When I lost my weight after being divorced, I became involved with a man who was a narcissist and the relationship seemed like a parallel to my molestation. I felt used, devalued, and invisible in the relationship and it took years to finally reclaim my self worth and separate from him.
My family environment was also turbulent as well. My step-father was intimidating and abusive at times, shaking and pulling my hair and throwing things. It wasn’t an every day occurrence and there were times he did try in his own way. Our family has many good memories and my parent both have accounted and apologized for the past. Still yet, I lived in fear and tried to be as perfect as possible. My sister and step-father butted heads and it made for a very scary and not so pleasant upbringing. My sister left me a lot alone with my step-dad as my mother worked, and I was terrified and often felt abandoned. I wasn’t allowed to express anger or really have a voice. This caused me to stuff lot of my anger and ultimately I never really learned how to express anger in healthy ways. I still struggle with this today.
Throughout my life, I have been misunderstood and treated differently as a result of suffering with two disorders: ADHD and Bipolar I. As a small child attending kindergarten, I often was berated by the teacher for having ADHD. I was different from the other children and was asked often if I had “ants in my pants”? I didn’t understand why I was getting into trouble all the time. In my adult years, I loathed myself even more when I became sick with Bipolar illness. I had friends who laughed in my face when I told them I had gone into a psychiatric hospital for care. One friend told me she did not believe in mental health problems and that I needed to “buck up & get over myself”. These sentiments were later expressed in subsequent years by employers when I attempted to get accommodations in place during an episode, so I could remain working. I was discriminated against and let go or it became so uncomfortable that if I did stay, I eventually left on my own accord. I’ve experienced years of frustration, often being misunderstood by friends, family, or coworkers who feel my illness is just an excuse I make up for bad behavior. It is dehumanizing and extremely hard to not only have an illness and suffer greatly from it, but then have your credibility questioned as a result.
Lastly, My sister has struggled with addiction for years and it has caused immense strife in our family. I confront while others often enable, defend, lie, and hide. I would have let things go, but she had five children, all of which are young adults now, and I’ve had to watch them struggle along with their own stories of addiction. Not one of them walked across the stage to graduate and two of them do not even hold GEDs. Their potential was robbed without their awareness. I longed for a better life for all of them, including my sister. This situation has truly been difficult to navigate and I am often devalued in the process. It has caused me to question my reality and whether or not I am a good person. It has truly been trying, at times, and I have often lost my patience in rage and despair.
Even with all the strife in past and present relationships, I have always tried relentlessly to reconcile things. I struggle with letting people go, even if they are not good for me. I’ve lost a lot of trust in humanity and in others because of the way I have been treated by those close to me. I admit all my wrongdoings and I still long for the day when I feel accepted and loved completely.
I often feel like a scared kid, just hoping someone picks me up, holds me, and helps me walk through this pain in my life.
I’ve decided that someone has to be me. We all must manage our own pain, develop better boundaries, and love ourselves. We must forgive ourselves. Sadly, I can forgive everyone who has hurt me, but I have the most difficulty forgiving myself. I often desperately continue to return to those individuals in my life that are not truly open to loving me, or even themselves. I become angry when they devalue me and my reactions become the rationale for why they leave. And so, I must go through the difficult task of starting over and rebuilding, learning to let people in slowly, with stronger boundaries in place. I also have to disengage from those increasing the intensity in my life which often leads to relapses with my Bipolar illness. This is a balancing act. I hope sharing helps others out there who are also navigating several tough situations at one, they are not alone. It’s messy, it’s hard, but it’s possible.
And this is my toughest lesson to learn and my greatest challenge in my lifetime: To love myself enough to develop boundaries and slowly let those people in that will enrich my life and foster my growth and maturity. I believe they are out there. I truly am in the middle of this metamorphosis and I hope to one day look back on my life and see that I did it, I changed. I forgave myself, loved myself, and let go of those who are unwilling or unable to join me on this journey. No one said love would be easy, but I do believe it is worth it. And if you are struggling with self worth, I will say to you: WE ARE WORTH IT. Every human being is worth the journey towards healing and wholeness.
I’m using this piece as a series and am going to follow up with posts of thoughts and progress regarding my healing process. It helps me feel not so alone. Happy healing! Thanks for reading!
Love and work are the cornerstones of our humanness.
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
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.
Work Productivity: Due to a diminished ability to concentrate and attend to appropriate stimuli, mistakes can be made or work may not get completed.
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.
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.
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.
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
This is another older poem of mine written about an emotion I am all too familiar with, fear. All my life, I have been running from some invisible danger. I’ve been restless and on the move, seeking stimulation to avoid the stillness. To be still, is to be unprepared. One should never let their guard down. There is, however, a valid reason for why I have been trapped for so many years in this state of extreme watchfulness.
When I was only four years old, I was molested by my next door neighbor. Although most of the details of the molestation are not well-formed, I believe the memories laid dormant in every inch of my physical being until later in life when it became too hard, too exhausting, and too damaging to continue living at such a heightened state. When the abuse occurred, I swallowed the shame and secrecy, and denied myself awareness of the event. I carried in my small frame the promise to never make “the mistake again”, resulting in extreme hyper-vigiliance. Revealing the secret at the time placed my Mom in danger as the perpetrator was threatening to harm her if the secret was told. Out of this came my ability to read situations and people with surprising accuracy as it was a way of survival for me. Years later, I communed with the part of me that had been silenced, devalued, and frozen in fear. I continue to commune with her and reassure her that she is worthy, visible, and safe. This event colored my perception of the world and as a result, I have always been fearful, having multiple phobias and general mistrust in others.
And so, “This Fear”, is an expression of what I have always known and remembered. And I’m working very hard with intention to calm those places within me that still haven’t heard my adult voice that is saying: “I am safe, I am here, I am visible”. This fear will then let go little by little, realizing that I am not longer under siege.
I felt moved to write this tonight because I was speaking with a friend who also had experienced quite a bit of trauma in her life. She is truly struggling at the moment. It reminded me of the last decade of my life of which I call the “Decade of Darkness” where I was engaging in an abusive relationship with a Narcissistic and was recklessly gambling. I see now that I was filling my hours with chaos in order to avoid the stillness. Often times stillness to a survivor of trauma feels threatening. I’m still learning to “be still” and enjoy the peace that is provides. It is a transformation and I haven’t made it to the other side yet. I’m intrigued about a life lived with less chaos where I am able to relax and have less chronic pain from years of remaining on guard, often holding my breath.
I feel that this is my greatest work in life, to heal so completely that most of the fear within is released. Perhaps, I can help those who also hold fear, shame, and despair and are fruitlessly avoiding the stillness, feeling it is less safe somehow.
And so now, I am ready to “do something about it”. I’m infinitely blessed to have the insight and awareness as to why I held on for so long. I just want to pick my four year old up and hold her tight, hugging her completely, reassuring that she is in safe hands now. That fear “really did love me”, it was a source of protection and watchfulness for a time, and I thank you little one for keeping me safe. Your job is done, you can rest now.
For so long I avoided you, gave you the silent treatment, ran the other way. I wouldn’t let you stay.
I thought the layers of pain caused by abandonment, betrayal, invalidation, and neglect would be intolerable to acknowledge.
I sit with you now, pouring a hot cup of tea, my eyes brimming with tears as I watch the steam dissipating and I take a heavy sigh.
All the years of not knowing how to let go, constantly running, desperate to find safety, shelter, and security in the arms of another or some other noble endeavor. The more I pursued, the further I became lost, hopeless, desperate, and suffering.
Always feeling that something outside of myself would come and rescue me. Always searching for the validation needed to feel visible, loved, wanted.
And only getting farther away.
I’d like to sit down and have a chat with you. I know, I should have done so long ago. I was confused and uncomfortable. I was restless and bored. I was alone.
So, it’s time to say goodbye to certain people, patterns, and preoccupations. It hurts. But, you are here with me. You know my every hurt, my every pain… and together we are here in this space. You won’t leave. For you are a part of me. A part I’ve ignored, neglected for a long while. Even so, you are still here. I AM HERE. And I am ready.
And so I have a journey to take. In time, there will no desperate arguments with family. Arguing has been the way that I have been “holding on”. It is time to let go. I won’t remain engaged with people who do not wish to truly know me or nurture my spirit. I will not provide those who are unable to love and give to me a space to occupy in my life, my mind, or my spirit.
There is so much to forgive, to let go, and to accept. I could have spent my whole life invested in the pursuit of finding someone to love me and I would have missed this glorious opportunity to truly love myself.
You are a wise friend. A teacher. Allowing me to connect to what has harmed me, and to let go and breathe newness and life into what has dimmed my authenticity. By connecting, and feeling, I will be more in tune with my self and my needs, setting better boundaries.
I’ve been restless and running for years without direction or purpose, frantically putting out fires, and desperately warning others to contain their flames or they will get burned. It seemed that most around me were in danger or were stagnating and without considering my own downward spiral, I relentlessly pursued the impossible feat of helping those in my life who, at the time, had no real desire to change. I not only dove in, but was swimming laps around the lake, often alone, in the dark. It became exhausting, dangerous, and desperate. And ultimately, those who needed the help did not care that I was drowning as a result.
The two individuals in my life where I spent the majority of my time desperately seeking love were my sister and my ex fiancé. My sister’s addiction and the devastating impact it has had on her now adult children captured my time and attention resulting in intense strife between me and my entire family. I was the one confronting while my sister used and my Mom enabled. The abusive relationship with my fiancé, a Narc, set the stage for an intense decade of both physical and psychological abuse, gaslighting, stonewalling, devaluing, and discarding. It was a cycle that continued for nearly ten years and consumed me.
These two relationships taught me to listen to and honor my spirit. Initially, they stripped me of my dignity, self worth, and esteem. In the end, I felt broken, unloved, and devastated. I spent the last two years of my life in darkness due to the complete demise of these bonds, which resulted in severe depression and an exacerbation of my Bipolar illness. I lost employment and as a result I am in the process currently of potentially getting onto disability. My world came crashing down and left me in a space stripped of everything I had clung to for years. It took several months, but I began letting go and learning who I am within the stillness, without the chaos that had defined my life.
The confusion is slowly subsiding as I learn to embrace what is mine and let go of what I cannot control. There is the shame and embarrassment for getting too involved, not letting go earlier, and for the behaviors that resulted from years of rejection and alienation. There were days spent in agony where I was enraged and in despair for the love I could not make mine. If I learned nothing else in this process, I learned that holding on was more painful and destructive than letting go.
While at the same time, there is forgiveness and acceptance with the awareness that I was learning and doing the hard work of carving out my self esteem, fighting for my own self worth. I’ve spent time comparing my successes and failures to others which I have learned is a dangerous practice because it is impossible to truly know another person’s story and each of us have our own unique path to wholeness. My desire was to make myself whole, starting with the events in my childhood that had immobilized me, and left certain places in my life dark, desolate, and without care. I longed for a space of complete healing where no part of me from the beginning of my existence to the present moment would be left untouched, unchanged, immature. This desired growth would be my metamorphosis. I would not be satiated until I could spread my wings and fly, lightly, at ease, with joy and reverence for what I had accomplished.
And thus, I continue to touch those untouched places with kindness and compassion. I continue to come back to this place of healing after every distraction and derailing. I continue to forgive and focus on the goal of freedom. I continue to create boundaries that foster this growth instead of pull me away from it. And lastly, and the most difficult, I continually remind myself to only engage and invest in those who turn towards me, not away from me. My heart continually breaks for those I know suffering, and yet, I admit, my involvement does not change their situation, it has only left me feeling hopeless, helpless, and often discarded. I must heal myself, invest in myself, and be a lighthouse and safe harbor when and if they are ready to heal. In this stillness, my garden will grow and I can rebuild. My intention is in light and love and the energy and investment is in creating this space for myself. It’s my most challenging and rewarding work.
I have started this blog as a way of healing. In the past decade, my life became increasingly chaotic and frustrating, much like tangled yarn that even with hours of attempting to disentangle, appeared hopeless and muddled. Through the torment of an abusive relationship with a narcissist, the loss and strain of family bonds due to my sister’s addiction, and the fight and failure to remain employed due to my mental illness, I became despondent and in despair. All of this caused a physical struggle of chronic pain, anxiety, and multiple somatic concerns that I still struggle with today.
The events in my adult life which have rendered me unemployed due to an exacerbation of my illness, Bipolar 1, ADHD, and PTSD, have left me completely unraveled and dependent upon others for the current time for survival. There is nothing more humbling that losing your ability to maintain employment due to an illness. The loss of independence is crushing, and yet, I’m still hopeful on most days I will bounce back, and this time, it will be after having the space and time to heal and to learn skills that will support my health and success.
It has been messy. I’m standing in the thick of it all with eyes mostly open. I’m accepting my responsibility to play the cards that have been dealt, no matter how difficult or challenging. I am also aware now that I’m alone in holding the cards. There will be some that judge every raise, every fold, and every discard. And there will be times I will make a mistake, but I’ve learned that often mistakes are necessary to be more skillful with the next hand dealt. Even so, this game is filled with times of suspense, boredom, joy, and despair. I’ve learned we need them all.
Initially, I felt compelled to separate the issues of my life and write a blog related to each one. But, I’ve decided the interplay between the three is necessary to demonstrate how often times we live a complex life with many competing forces and it is the combination of all of our struggles that can render us immobilized, often overwhelmed with fear, grief, and anger. As I heal, I am beginning to see a thread tying all of my struggles together and I hope to speak to this force as a means to forgive, grieve, soothe, and ultimately love. The road is difficult and so much pulls us away over and over from the reservoir of love and stillness that resides within us if we are able to let go and focus on what we are willing to control.
I named my blog “land undefined” because life, for me, is a process of definition. Just as a sculptor starts with a lump of clay, it takes time, dedication, skill, focus, and even love to mold something with no true definition to a piece of art that has to ability to resonate with others and elicit emotions of love, admiration, and joy. This is the challenge in our own lives. We are forever defining ourselves, placing boundaries to keep us safe, and molding what we desire for ourselves, our lives, which is a work of art. Our spirits are housed in a temple that again, we have the ability with focus, love, and work to define over and over throughout the course our lives.
Throughout this journey, I will go back to the challenges that have helped to create and form my impression of the world, and the healing that is taking place to redefine my spirit and life after the lesson. Often we forget that we are not in a static world, and that we are meant to adapt, and change with time. Our transformation can only be as dramatic and beautiful as our willingness to let go and be molded once again. I will keep coming back to this concept to demonstrate in my own life how stagnation and despair occurred when I would not heed the urgent call to let go and change! This is paramount to my healing process and I am continually working to achieve this.
I hope you someday join me on my road of forgiveness and self love. It has taken me decades to wake up and to acknowledge the many mistakes I made that led me further away from myself and to a place of rage, despair, and deep regret. The only real gift we have is the present moment and we often spend our lives escaping it in some form. Thanks for standing in this space with me. More to come as I am all unraveled and learning and am hopeful that sharing will help others and me stand more lovingly in this space!