YNET Goes Beyond the Pain; Societal Stigma of Mental Illness

https://www.ynet.co.il/articles/0,7340,L-5385974,00.html

Original Published Article

Original Outline

"מחלת נפש היא חלק ממני אבל לא מגדירה אותי"

דינה פולישוק סובלת ממחלת נפש שמכתיבה את מהלך חייה. בטור מרגש היא מספרת על המגבלות שהמחלה מציבה בפניה, על הסטיגמות שהחברה לא משתחררת מהן ועל האנשים שהאמינו בה ונתנו לה הזדמנות להגשים את החלומות שלה

דינה פולישוקפורסם:  07.11.18 , 12:54

אני סובלת ממחלת נפש. זה רציני, זה מתיש וזו לא בדיחה. אני חכמה, אינטיליגנטית ואינטלקטואלית. למדתי לתואר מתקדם והייתה לי קריירה במשך שנים רבות, תוך כדי התמודדות עם מחלת הנפש, עד שהיא התגברה על חיי.

אני לא נעלבת או נפגעת כשמשווים טיפשות עם מחלת נפש, זה פשוט מעציב אותי. הסיבה שיש סטיגמה למחלת הנפש, סטיגמה מסוכנת שמונעת מאנשים לבקש עזרה שהם זקוקים לה עבור שיקום וכדי לבנות חיים של משמעות, היא תוצאה של חוסר ידע וחוסר רצון להבין.

מחלת נפש היא תופעה אמיתית ומגבילה, אבל לא מדובר בגזר דין מוות. יש תקווה וטיפול, ומחלת הנפש שלי היא חלק ממני, אבל היא לא מגדירה אותי.

סטיגמה למחלת הנפש. יש טיפול(צילום: Shutterstock)

לפני מספר שנים אושפזתי במחלקה פסיכיאטרית בפעם הראשונה. במקביל לתחושת הבלבול והכאוטיות, חשתי גם הקלה, כי האמנתי שסוף סוף אקבל את העזרה שהייתי זקוקה לה נואשות. לצערי, במקום להשתקם, הפכתי להיות מושא ללעג וזלזול.

היו שהעירו ואמרו שאנשים רבים חווים משברים וקשיים ועדיין הם לא מגיעים לאשפוז פסיכיאטרי. הם גרמו לי להרגיש שאולי אני טועה ואפילו צריכה לחוש בושה על כך שפניתי לעזרה. היו שניסו לבטל את החוויות שלי והניסיון שלי להבין כיצד הגעתי לסיטואציה הזו. עד שלבסוף הסטיגמה האישית הופנמה ובמשך כמה שנים לא יכולתי לצאת מהבית ובקושי להתקלח או לישון. התביישתי בקיום שלי כל כך עד שקברתי את עצמי בארון וירטואלי, מערה, שיצרתי בראשי כדי להגן על עצמי.

בהתחלה, המשכתי לנסות "להחלים", למרות שלא היה לי חזון לגבי מה זה אומר להחלים ממה שאני מתמודדת איתו. הסטיגמה השלילית גרמה לי להרגיש יותר ויותר לא כשירה ולא ראויה. ככל שהפכתי להיות מודעת למוזרויות שלי וככל שניסיתי להתגבר עליהם, כך נכשלתי, עד שלסוף ויתרתי על עצמי.

"אנחנו רואים אותך מבעד לכאב"

אני זוכרת התכתבות במיילים שהתקיימה בין אחותי לביני באותה תקופה חשוכה בחיי. ניסיתי לשכנע אותה לעזוב אותי לנפשי ופשוט לתת לי למות. היא סירבה להסכים עם הקביעה שאני חסרת ערך. שנים לאחר מכן, הצלחתי להעריך את ההקרבה שלה. עבורה היה מדובר בהשקעה מינימלית באחות שהיא אוהבת ומאמינה בה, בעוד שזה היה למעשה הרבה יותר מזה.

כל זאת ועוד. למרות העובדה שמחלת נפש היא טאבו בקהילה שלנו, היא עשתה צעד לא פשוט כשחשפה את מצבי בפני בן זוגה הטרי ומשפחתו, כדי לגייס אותם לעזרה. הם אכן סייעו וחיברו אותי לתוכנית שיקום. אולם על אף הנחישות מצדי, נבעטתי החוצה מהתוכנית הזו. ומזו שאחריה. אבל מסר אחד שקע בזכות ההתערבות של משפחתי: "יש לך סיכוי. אנחנו רואים אותך מבעד לכאב ומעבר לבושה שאת חשה".

בהמשך הדרך השתלבתי בעמותת 'אנוש'. דרך הליווי שקיבלתי ובאמצעות סל השיקום, למדתי כיצד לקבל את עצמי כפי שאני. אתגרי מחלת הנפש שלי הם חלק ממי שאני. אני לא יכולה להתכחש לקיומם או לברוח מהשפעתם על עברי וממי שאני היום. ועדיין, יש בי עוד כל כך הרבה מעבר לתווית או לאבחנות.

אמיר, המנהל של תוכנית השיקום בקהילה והמדריך שלי הסביר זאת הכי טוב: מחלת נפש לא מגדירה אותך כאדם. המסר של 'אנוש' הוא שלכל אדם, כולל מי שנאבק במחלת נפש, יש מה להציע לחברה ואין לתת לאתגרים של ההתמודדות הנפשית לעמוד בדרכם, בדרכנו. בטח ובטח שלא ניתן לסטיגמה חברתית שלילית לעצור אותנו או להשאיר אותנו מאחור.

תמיד תהיה סטיגמה על המחלה

הסטיגמה תמיד תהיה קיימת ואני לא זקוקה יותר לאישור מכל אדם אחר בעולם. למדתי כיצד לתת לעצמי תוקף, וזה הדבר החשוב ביותר. עם זאת, אני ממשיכה להיתקל בחומות ומחסומים בדרכי לחיות את חיי.

הנה, רק לאחרונה התקבלתי לעבודה ועדכנתי את המעסיק שיש לי מחלה נפשית ואף הצגתי בפניו אישורים רפואיים על יכולותי לעבוד. ברגע שהסתיימה ההכשרה עבור העבודה הוא הודיע לי שהם בעצם לא זקוקים יותר לשירותיי. הוא לא הרחיב מעבר לזה ולי נותר רק להניח שהוא חושש להעסיק אדם שאובחן כמתמודד עם מחלה נפשית.

בפני המעסיקים הנוכחיים שלי חשפתי את האמת לגבי מצבי הנפשי רק לאחר תקופה בה חשתי נטל כבד להסתיר את המידע הזה. ועדיין כל יום אני חוששת שהם יעריכו אותי באופן שונה בעקבות כך ושאולי עשיתי טעות שחשפתי את עצמי.

ומה לגבי העתיד? התוכניות שלי הן להתמיד בעבודה שלי, להיות יותר עצמאית מבחינה פיננסית, למצוא מקום מגורים משלי, ואולי אפילו אוכל לכלכל את עצמי ולא להסתמך על קצבת הנכות.

החלום הגדול שלי הוא להיות רופאה או להיכנס לתחום המחקר, כדי למצוא עוד פתרונות עבור מתמודדי נפש. מחלות רבות חוו פריצות דרך רפואיות וטיפוליות במהלך 50 השנים האחרונות, בעוד שבריאות הנפש ופסיכיאטריה עדיין לוטות בערפל.

אני לומדת, אני כותבת בלוג אישי, ויש לי חלומות רבים ושאיפות אליהן אני מקווה שהעתיד יוביל אותי.

אנוש, העמותה הישראלית לבריאות הנפש, מקיימת השנה את ערב ההתרמה השנתי ומציינת 40 שנה של פעילות. כל הכנסות הערב יופנו לתמיכה במגוון שירותי השיקום, אותם מעניקה 'אנוש' למתמודדים עם מגבלה נפשית, לבני משפחותיהם ולמאבק בסטיגמה.

האירוע יתקיים ביום ראשון ה- 11/11/2018 בשעה 20:30, בהיכל התרבות בתל אביב.



Google Translation

"Mental illness is part of me but does not define me"

Dina Polishuk suffers from a mental illness that dictates the course of her life. In a moving column she tells about the limitations that the disease poses to her, the stigmas that society does not release, and the people who believed in her and gave her a chance to fulfill her dreams

Dina Polishukforsam: 07.11.18, 12:54

I suffer from mental illness. It's serious, it's exhausting and it's not a joke. I am smart, intelligent and intellectual. I studied for an advanced degree and had a career for many years, coping with mental illness, until it overcame my life.

I'm not insulted or hurt when you compare stupidity with mental illness, it just makes me sad. The reason there is a stigma to mental illness, a dangerous stigma that prevents people from asking for help they need for rehabilitation and to build a life of meaning, is the result of lack of knowledge and unwillingness to understand.

Mental illness is a real and restrictive phenomenon, but it is not a death sentence. There is hope and treatment, and my mental illness is part of me, but she does not define me.

Despondent woman on the sofa (Photo: Shutterstock)

Stigma of mental illness. There is treatment (Photo: Shutterstock)

A few years ago I was hospitalized in the psychiatric ward for the first time. Along with the sense of confusion and chaos, I also felt relieved, because I believed that I would finally get the help I desperately needed. Unfortunately, instead of being rehabilitated, I became an object of ridicule and contempt.

There were those who commented that many people were experiencing crises and difficulties and still did not get to psychiatric hospitalization. They made me feel I might be wrong and even feel ashamed that I had turned for help. Some tried to cancel my experiences and my experience in understanding how I came to this situation. Until at last the personal stigma was internalized and for several years I could not leave the house and hardly take a shower or sleep. I was so ashamed of my existence that I buried myself in a virtual closet, a cave I had created in my head to protect myself.

At first, I kept trying to "recover," even though I had no vision as to what it meant to recover from what I was dealing with. The negative stigma made me feel more and more incompetent and unworthy. The more I became aware of my eccentricities and the more I tried to overcome them, the more I failed, until at last I gave up on myself.

"We see you through pain"

I remember correspondence in emails that took place between my sister and me during that dark period of my life. I tried to persuade her to leave me alone and just let me die. She refused to agree with the statement that I was worthless. Years later, I was able to appreciate her sacrifice. For her it was a minimal investment in a sister she loved and believed in, while it was actually much more than that.

All this and more. Despite the fact that mental illness is a taboo in our community, she made a difficult move by exposing my situation to her new partner and his family, in order to enlist them for help. They did help and connected me to a rehabilitation program. But despite my determination, I was kicked out of this plan. And the one after it. But one message sank into my family's intervention: "You have a chance, we see you through the pain and beyond the shame you feel."

Later I joined the "Enosh" association. Through the escort I received and through the rehabilitation basket, I learned how to accept myself as I am. My mental illness challenges are part of who I am. I can not deny their existence or escape their influence on my past and who I am today. Still, there is so much more to me than labeling or diagnosing.

Amir, the director of the community rehabilitation program, and my guide explained it best: Mental illness does not define you as a person. The message of 'Enosh' is that every person, including those who struggle with mental illness, has something to offer society and that the challenges of mental coping should not be allowed to stand in their way. Sure, and certainly not a negative social stigma can stop us or leave us behind.

There will always be stigma about the disease

Stigma will always exist and I no longer need approval from anyone else in the world. I learned how to give myself validity, which is the most important thing. However, I continue to encounter walls and barriers on my way to live my life.

Recently, I was hired and informed the employer that I had a mental illness and even presented him with medical certificates for my ability to work. As soon as the training for the job was over he informed me that they really did not need my services anymore. He did not expand beyond that and I can only assume that he is afraid to employ a person who has been diagnosed with mental illness.

To my current employers I revealed the truth about my mental state only after a period when I felt a heavy burden of hiding this information. And yet every day I fear that they will appreciate me differently in the wake of this and that perhaps I made a mistake that I exposed myself.

And what about the future? My plans are to stick with my work, to be more financially independent, to find my own place of residence, and perhaps even to feed myself and not to rely on the disability pension.

My great dream is to become a doctor or to enter the field of research, to find more solutions for mental contenders. Many diseases have experienced medical and therapeutic breakthroughs over the past 50 years, while mental health and psychiatry are still unclear.

I study, I write a personal blog, and I have many dreams and aspirations to which I hope the future will lead me.

This year, Enosh, the Israeli mental health organization, celebrates 40 years of activity. All of the evening's income will be channeled to support the range of rehabilitation services that Enosh provides for those with mental disabilities, their families and the struggle against stigma.

The event will take place on Sunday 11/11/2018 at 20:30 at the Mann Auditorium in Tel Aviv.

Original Draft in English - Before Translation to Hebrew and Editing 

for Published Media

Several years ago, I was hospitalized in a psychiatric ward for the first time. In addition to many chaotic and confused emotions, I also felt a deep sense of relief because I believed I would finally get the help I so desperately needed. Naively, I entered the world of psychiatric care with optimism, and boy did I get a rude awakening. After years of suffering, instead of receiving care I was ridiculed and belittled.

“Why are you here?” the psychologist asked. “Many people experience tragedies and abuse, and yet they don’t land themselves into a psych ward.” Through the duration of my treatment, she succeeded in convincing me that I was a wrong, and maybe even disgraceful, for reaching out for help. I also felt completely and utterly belittled. In the same process, she and her team, seemed to delegitimize my experiences and any attempt I made to understand how I had came to this situation. During the course of that hospitalization, and subsequent inpatient and outpatient treatment programs, my opinions were discredited and my questions dismissed. The message was clear: you have no right or ability to be a partner in your own care.

The clear cut answer to my question - what does it mean to be mentally ill - was: you are permanently damaged and flawed; contemptible, deplorable, and unworthy of dignity or respect. The personal stigma was internalized and for several years I wouldn't leave me home and could barely shower or get out of bed. I was so ashamed of my existence that I buried myself alive in a virtual coffin, a cave I created in my head for my own protection. Protection from the very real fear of failure and invalidation.

At first, I continued to try to “get better,” even though I could not envision what that meant. The negative stigma associated with my symptoms made me feel further and further invalidated the more I became aware of my quirks and inadequacies. The more I tried, the more I failed, until finally, I gave up on myself.

I recall an email exchange that took place between my sister and I during that dark period in my life. I was trying to convince her to leave me alone and just let me die. She refused to agree that I was worthless. Years later, I was able to appreciate her sacrifice; though she would refer to it as the bare minimum and a worthwhile investment in a sister she both believed in and loved. Mental illness is taboo in our community and she divulged my situation to her fiance and his family in order to enlist their help. Her in-laws connected me with a program tailor made for my rehabilitation needs, yet with sheer determination I got myself kicked out of that program, and the next one after that. The message, however, seeped in. You have potential. We see you through your pain and beyond your shame.

With the therapy I received through “Enosh” and “Sal Shikum”, I learned how to accept myself for who I am. My mental health challenges are a part of who I am; I cannot deny their existence or escape the effect they had on my past and in who I am today. Yet there is so much more to me than a label or diagnoses. Amir, the director of the work skills and extracurricular rehabilitation programming, put it best. “Mental illness does not define you.” The message and the mission of Enosh is that every person, including someone who struggles with mental illness, has so much to offer society. We will not allow their mental health challenges to stand in their way, and we definitely will not allow negative societal stigma to hold them back either.

Side note: A story that encapsulates the complexity of the stigma of mental illness. In consultation with my family doctor I shared the recommendation and response from my visit with a new psychiatrist I was trying out. I suffer from migraines and headaches and hoped she would offer insight. After hearing my mental health and rehabilitation background, she asked, I don’t see how I can help you. You are on a good track and you seem to have it all covered. What do you need me for? He smiled and was genuinely pleased. That is a great thing when a psychiatrist says you don’t need their help. I can’t recall if he actually said the words or just implied, hey, that means you aren’t crazy. I know he respects me, and I was glad to see again how he is rooting for me, but from my side I was also frustrated. In that moment I didn’t care if I was crazy or not, I just wished someone could cure my headache disorder. I am still desperate for relief from my physical pain, but it’s great to know I have people pulling for me. Stigma will always exist and I no longer need validation from every person in the universe. I learned how to validate myself - and that is most important.

With regard to the stigma of work, I told an employer I have a mental illness, gave him a doctors note authenticating my ability to be employed and demonstrate competence. At first he seemed ok with it, and even paid for vaccines and job training to prepare me for the job. However, when the process was complete, he said they no longer have a need for my services. He wouldn’t elaborate, so I can only guess that maybe he got scared of hiring someone with a known mental illness. When I applied to this job I did not divulge my background. It became difficult to bear the burden of leading a double life, yet I am still concerned every day that maybe now they will assess my job performance differently and I wonder if I made a mistake sharing my personal information, even after they first had a chance to get to know me without preconceived notions.

Email Exchange for Editing that Includes Additional Information in the Planning Stages of this Article

Thanks for the feedback. Sorry, it is a little complicated for me to type in Hebrew from my home computer. I think what you said makes sense about being relevant to people who do not struggle with mental illness can relate to. Maybe, then lets take out the last story, but I think how my introduction to being mentally ill was that I am flawed, and a message i got even from mental health professionals, was the catalystic thesis of the piece. I did not include the part about work because I ran out of space, but I will include it now.

 My plans for the future is to maintain my job, become more independent financially, find my own place, maybe even be able to fully support myself and not rely on kitzbat nechut - disability benefits. With regard to career goals I have a dream to become a doctor or go into the field of medical research to find more solutions for individuals with mental illness. Cancer, diabetes and other illness have had man breakthroughs in the past fifty years whereas psychiatry is still operating in the dark ages. I also have a passion for education, passing the knowledge I have learned so it can help others. That is why I have a philosophy blog, a health science blog among others. After a speech I gave to a group of high school students a young girl approached me and said she sees her story in mine. She felt validated and relieved that she met someone who could understand her. Though she receives mental health services, she had little hope or vision for her future. She found in me a role model, a title I dont know if I deserve or am living up to, but I am grateful to be able to fill that role for her nonetheless. Right now I am building work skills and interpersonal skills with my job, I study, I write in my blog and I have many dreams and aspirations of where the future might lead me.