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!
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