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The Silence of Stigma (“Shhh!”) | Jessica’s Powerful Tale

PTSD

Stigma! In all its insidious glory, it destroys lives. PTSD, anorexia, major depressive disorder, schizophrenia – those in the midst are innocent victims of discriminating cruelty. It’s long beyond time we confronted stigma and put it down. And tales of bravery and endurance, like Jessica’s, bring inspiration and motivation.

Love presenting guest posts. We first met Jessica some two months ago when I posted a piece based upon an article in the USA Today series “The Cost of Not Caring” – in which Jessica was featured. Shortly after posting, Jessica got in touch – and we’ve been communicating ever since. I asked her if she’d be willing to bring us a guest post and, thankfully, she agreed.

Be inspired and motivated…

It is my passion that not another person experiences their diagnosis being kept from them – all because of the fear of stigma! Jessica

Jessica’s Powerful Tale

When I was 22-years-old I was catatonic (not talking or responding to stimuli), not able to eat or drink, and dying in a psychiatric hospital. Electroconvulsive therapy (ECT) was used as a last resort, and after a few rounds I was slowly able to take in fluids, eat, and talk again.

The doctors informed my parents I was diagnosed with schizophrenia, and they believed this diagnosis should be kept from me to protect me from the stigma associated with mental illness. I was told I had “no diagnosis” and my situation was “special” – and my symptoms were like nothing the psychiatrists had seen before.

As a young woman I lived in a care home, and received most of the same services as all my new friends with schizophrenia. I would meet up with the gang at a weekly event called “The Schizophrenic Luncheon,” which I enjoyed and looked forward to.

Consequently, since Mental Health Services also did not know I was diagnosed with schizophrenia, I was told I had to pay $5 if I wanted to continue to attend the luncheon. I was devastated, as this was a lot of money – since I only received 80 sum-odd-dollars a month to buy the things I needed. I felt alienated and stopped going to the luncheon.

Similarly, at a local clubhouse for persons with chronic mental illness, many of my friends met for a support group for persons suffering from schizophrenia. I knew I had many of the same symptoms and asked if I could join. There was a vote, and one of my friends voted against my being in the group. Why? Because I “did not have schizophrenia.”  This left me further alienated and without support.

As time went on, I decided I didn’t need to be on my medication. After all, if I didn’t have a diagnosis, then why should I be on medication? And, if I did not have a diagnosis, how do I know I am on the right medication?

The words of the psychiatrists floated around in my head that my situation was “special,” and it hadn’t been seen before. Therefore, I concluded it must be a spiritual problem, and I went from church to church looking for answers.

I had serious delusions. Each day, for much of the two years I was off medication, I waited to sprout wings and fly away. In that time I started hearing voices, which became so chronic I never had a day – a moment – without them. The struggle I had with the voices led to thoughts of suicide, as I wondered if I was responsible for hearing them. (Fortunately, years later I had a mental health case manager who encouraged me that the voices were not me, they were my illness. To this day, I believe his words have kept me alive.)

At 26 years old, I talked to a member of a church who was a counselor at a local high-school. After relaying my symptoms, he said the words, “That sounds like schizophrenia.”  And I immediately was defensive and upset, and adamantly assured him that I did not have schizophrenia! I reiterated that I was “special” and had “no diagnosis!”

At this point I was now living with my parents, and their attempts to treat my symptoms with herbs from the health food store had proved unsuccessful.  So four years after the diagnosis, my mom (in either a weak moment or a moment of strength) exclaimed, “You’re a schizophrenic! … You have schizophrenia!”  Subsequently, my whole world started to make more sense, and I sought treatment.

Having my diagnosis kept from me may or may not have protected me from stigma, but it did keep me from services, support, and the medication needed for my medical issues. To this day, I am stuck with the voices I started to hear while I was off medication. Like a scratch in a record, they are still there.

I believe there is the probability had I known my diagnosis, and stayed on my medication, my condition would not have become as advanced to the point of hearing voices. Yet because of my experience, I am a strong advocate for the early intervention and treatment of schizophrenia, and seek to fight the stigma attached to it.

This has led me to be the editor of two newsletters for persons with chronic mental illness, speak to college classes about mental health issues, and become involved with Stand Up For Mental Health to raise awareness about mental illness and fight the stigma associated with mental illness.

It is my passion that not another person experiences their diagnosis being kept from them – all because of the fear of stigma!

Stigma – Let’s Put It Down!

Thank you, Jessica. Your message is powerful, and your bravery and outreach are inspiring.

Borderline personality disorder, panic attack symptoms, bipolar spectrum disorders, major depressive disorder, psychotic disorders, compulsive behavior issues – folks, stigma is a discriminating destroyer of lives.

It’s time we gathered the motivation and courage to stand-up to it, and put it flat-down.

You in?

Hey, here are some interesting facts from NAMI – National Alliance on Mental Illness (a worthy membership, by the way).

And check-out this UK-based stigma and discrimination website!

Jessica Dawson was born in North Vancouver, British Columbia. Her involvement with Stand Up For Mental Health led to a small highlight in the book, The Happy Neurotic, by David Granirer. Earlier this year, Dawson was photographed and interviewed for the USA Today series “The Cost of Not Caring.” Jessica is a Media Outreach Coordinator promoting volunteerism, and attends her local college studying philosophy. Her interests include poetry, art, and journalism. She lives on Vancouver Island with her husband and son.

Plenty more Chipur titles (um, 600+) for you to peruse. Come on, check ’em out.

  • Thank you Jessica and Bill for sharing this important story. Stigma does infringe on a person’s ability to get the help that they need. So many people with mental health issues are held back and it seems so unfortunate when help is available. It is refreshing to hear Jessica’s story and how she has turned her life around. This is indeed a powerful tale and I appreciate you having the courage to come forward, Jessica which always helps others.

    • I’m so thankful Jessica contacted me, and agreed to give us this post. An extraordinary and powerful tale, for sure. And I’m sure stigma generates countless dilemmas such as Jessica’s. ‘Course, the wonderful thing is, Jessica has stepped forward for the cause.

      Thank you for visiting and participating, Cathy…

      Bill

  • Nancy Frye Peden

    Another BTW. Judith Herman, who wrote an amazing book about recovering from trauma, tells the story of, I think her name was Anna O. who was one of Freud’s patients and was abused by him badly. I don’t remember if it was sexual (but I think it was). What was sooo inspiring, like Jessica’s story, was that this woman, who was probably diagnosed as “hysterical” recovered herself. The way she recovered is she got away from Freud and I think it was, Germany where she went. She became immensely involved in political movements and got her life back even after the abuse she suffered. Bravo, to Jessica and bravo to the human spirit!

    • Here’s the scoop on Anna O. – a pioneering case in “talk therapy.” http://en.wikipedia.org/wiki/Anna_O. Actually, a patient of Josef Breur – but Freud put his two-cents, and then some, in. Freud didn’t abuse her. In fact, I don’t think he ever met her.

      Thanks for bringing the case to us, Nancy…

      Bill

      • Nancy Frye Peden

        Wow. Well, at least I know more of her mistreatment. Thanks, Bill.

      • Nancy Frye Peden

        Sorry, but I do not think Freud was guiltless of abusing patients in his experimenst.

      • Well, it appears as though Freud took advantage of this particular case (patient) – PR wise – after Breur bailed-out. Did he abuse patients in his experiments? Could well be…

        Bill

  • Thank you, Nancy, for your participation and insight. Really appreciate you sharing details of your personal experience.

    Readers – if you’d like more info on MTHFR gene mutations, check it out http://mthfr.net/

    Bill

    • Nancy Frye Peden

      Forgive this rant.

      Funny thing. Went to see my psych yesterday. The hospital system blocks a lot of sites and one is mthfr.net. Big Med trying to control people’s options. What a shame.

      Wish my psych was interested enough to do his own research.

      I am having an interesting response to my work with genetics. I have bought a thumb drive and put three very useful genetic reports, one tells medicines and how I would react and one lists diseases I may be susceptible to because of my genes. You would think that any doc would want this.

      But I was unable to get my psych or the hospital to put the .pdfs in my record and I have been to my GP’s office twice to simply get them to download this info.

      It is important that they be transferred electronically because there are many links that open in the .pdfs for further info. Yet, so far, no one will use this info except of course my naturopath who originally ordered the test and now has me feeling pretty dam good.

      I hope for the day when people, like me, can carry their gene reports with them and have docs accept the info. Other friends, on google+ MTHFR have had the same problem. Carefully putting together genetic reports and drawings to only have their docs sniff at the info.

      I believe that a lot of health lies outside Big Med and Big Pharma to a great extent and there is help if we seek it. Jessica’s story is evidence of the great tenacity it takes. Bravo.

      • Unfortunately, you’re way ahead of the times, Nancy. Your curiosity and due diligence serve you well, and one day they’ll be respected. I’m pleased you post these outside-the-box things here. It’s good for others to read and learn.

        Thank you, Nancy…

        Bill

  • Sweet video – thanks, Nancy…

    Bill

  • Sue Ledet

    All I can think, Jessica, to be happy about your horrible ordeal is that you’re so incredibly young. Young enough to affect so many young people. My head keeps thinking “carry it to the streets” from some song or other…. My failing to acknowledge bipolar disorder had everything to do with the stigma I saw attached to it. Then you only heard that word in whispers, never out loud. At 13, I thought I’d “caught” it and eventually it would go away, like a cold. So please, please keep doing what you’re doing.

    • Pretty sweet input and support, Sue. I appreciate your visit and participation…

      Bill

      • Jessica Dawson

        Thank you Sue; I had childhood head-injuries (which were not followed up on) and I always knew there was something different about me than most other people. My formal diagnosis is: “organic schizophrenia due to childhood head-injuries.”

        I am now 42 years old, and presently attending college twice a week, so I’m not so young to most of my classmates mates who are right out of high-school. I feel the generation gap! Taking university transfer courses is very difficult with my having both mental health problems and mobility issues. So few persons suffering with schizophrenia are able to pursue post-secondary studies and I’d like to break that statistic if possible! Thankfully, I get a lot of help from my worker at student services, and when she sees an obstacle to my education she does something to make things work. I couldn’t do it without her!

        If mental illness just went away like a cold, I think that would be awesome! Thank you again Sue, and wishing you peace, happiness, and health!

      • Hey, who knows? One day it might just be a very temporary inconvenience. Thanks, Jessica…

        Bill

  • Oh my gosh, Jessica, you have conquered so much and are such an inspiration — not only to others with mental illness but to challenging and fighting the stigma and shame that surrounds it. Thank you (and you, Bill) for this powerful share — I’ll be passing it along.

    • She’s for sure been a trooper, hasn’t she, Lisa?! And there are tons of tales like Jessica’s out there. Stigma and shame – it’s my hope that one day we’ll say good bye to both.

      Thanks for visiting and chiming-in, Lisa…

      Bill

    • Jessica Dawson

      Thank you Lisa, the fight against stigma seems never ending at times, but then I think of the Civil Rights Movement which took one person standing up at a time until thousands gathered to listen to the legendary Dr. Martin Luther King and hear him say the unforgettable words: “I have a dream!”

      • …and I’d like to see the dream come true. So glad you chimed-in, Jessica. And I’m very pleased I’ve come to know you.

        Bill

  • Patricia Miller

    Jessica, thank you for sharing the power and strength you have acquired over the years and the travails in getting to this place of passion and pursuit. You encourage me to keep pushing myself and testing my limits with regards to more and more transparency about the past damage, the diagnosis that grew in response to those hurts and harms, and the healing that has transpired over the years. If I do the “safe” thing and keep silent, nobody will profit by my experiences, and I recognize the disservice that does so many, not the least of whom is myself. Retaining my silence allows the past to maintain a greater presence in the present than it deserves and dishonors the reality of myself, plus it forces a facade that is so wearying to maintain. I believe that your vocal leadership is inspirational to me on many levels, and I am grateful to you and the challenges you faced and continue to face because your strength is what I see; I admire you so much.

    • Yeah, Patricia, it’s time to place silence aside. Fact is, it isn’t at all safe anymore. Jessica’s tale inspires me greatly, and I’m glad it brings good things to your table. As always, thank you for visiting and contributing…

      Bill

  • Jessica Dawson

    Thank you Nancy,

    I was sharing this article with my family doctor and he told me an interesting story: A patient came into his office and announced that they had Borderline Personality Disorder. My doctor then looked into the notes from the person’s psychiatrist. What he found was that the psychiatrist wrote all kind of indications that the person had symptoms which were reflective to Borderline Personality Disorder without actually making a formal diagnosis.

    Thus, the person was not able to know where to look to get the information they needed concerning the symptoms they were experiencing. They were left trying to figure out what was wrong, when the psychiatrist already knew, but was reluctant to make a formal diagnosis.

    It looks like my situation is still happening today right under people’s noses. When psychiatrists refuse to tell their patients of their diagnosis, the patient is left scrambling in the world trying to find answers.

    All the best to you!