Last week, I had the honor and privilege to share an original essay on shattering stigma as part of the Stigma Fighters series on oldschoolnewschoolmom.com. Sarah Fader created Stigma Fighters as a safe place for people to share their stories about living with mental illness. Sarah not only has created this non-judgmental space for others to share, but she also shares her personal story as well.
Sarah is now looking to take Stigma Fighters out to a broader audience, including college campuses, where she will be speaking and arranging for community meet-ups for people living with mental health challenges. You can help Stigma Fighters become a 501C3 organization. For information, click here — >http://www.funddreamer.org/campaigns/help-stigma-fighters-become-a-501c3
Here is a repost of my essay originally featured on Stigma Fighters:
“Shattering the Stigma”
When you find yourself in the midst of a mental health crisis, whether your own or of someone you love, you can feel as though you are about as far from paradise as you’ve ever been. That is how I felt after I found myself in the middle of my son’s crisis and why I began writing my blog. I tell my story as a way to bring light and attention to the stigma around mental illness and to openly share, not only about my successes and challenges supporting my son through his situation, but also as a way to discuss and deal with the emotions and difficulties of mine. I also share so that others may feel safe to tell their story.
My story began just months before my son’s 16 birthday. He went from fun loving, active kid with many friends to isolated, dark, and forlorn in a matter of months. Thinking that he was just experiencing typical gloomy teenage behavior, I had no idea that the rug was about to be pulled out from under me. Yet on Christmas Eve 2010, I was suddenly faced with just how serious things were when my son ended up in the Comprehensive Psychological Emergency Program (CPEP) at our local hospital. As we started down the road of treatments, medications, hospitalizations and therapies, the one thing that struck me was the fact that no one seemed to be talking about mental illness.
Having never been exposed to this level of mental health crisis, I really hadn’t given it much thought. There was the occasional news story about someone who had mental health challenges committing a crime or acting outside the societal norms but I had truly never been faced with such an up close and personal view. I started to ask around to find out who else was going through the same type of situation. I felt like the best thing for me, in that moment, was to sit across the table from another mom or dad who had gone through or was going through similar challenges and get their perspective and guidance on how to navigate the unknown waters that I found myself in. I looked around the waiting rooms at the CPEP and other treatment facilities and wondered whom do these people talk to and turn to for support? Having had no luck finding someone who would share their personal story with me, the best answer I could come up with was that they weren’t talking about it to anyone. Chances were they were keeping the secret of mental illness because of the shame, guilt and stigma that is so often connected with it.
At one point I mentioned to a health care practitioner that I was looking for someone who I could speak with that may be able to help me understand what I needed to do to support my son. The practitioner mentioned that she knew someone in a very similar situation and would ask if the person would speak to me about her circumstances. Later, this practitioner came back and said that the person was not willing to talk, in fact aside from their physician and her husband, no one else even knew that they were experiencing this crisis with their son. I was floored. I realized at that moment, how strong the stigma and shame related to mental illness really was. I also realized that no one else was going to give me the ground rules and guidance on how best to support my son, so it was up to me to ensure that he had the services, support and counsel that he needed.
To say that I fought for my son’s care is an understatement. The one place that I didn’t expect to experience stigma was in the medical facility setting. It is no wonder that people do not want to talk about Mental Health, it seems that even in a treatment setting, there are those looking to assign blame and shame. And that was not the only hurdle that I had to jump while supporting my son. Having never experienced a serious health crisis of any kind, I was completely stunned when the managed care provider, responsible for my behavioral health insurance, became a roadblock to my son’s care.
There were a number of occasions during my son’s care where the hospitals or facilities attempted to make treatment decisions, not based on the health and well-being of my child but based on whether they felt they would be paid for the services they were providing. In one situation, my son was discharged too soon from an Adolescent Psychiatric ward, against our wishes, and five days later he attempted to take his own life. And that was not the last time I had to fight for my son’s life. There were numerous times when I had to fight against the stigma of how other’s viewed mental illness while I was fighting tooth and nail for the care that my son needed.
This is when I started telling my story, hoping that others would be able to benefit from my lessons learned and pitfalls avoided.
When I think of fighting stigma, it goes beyond changing the landscape of how society views mental illness. It is bigger than that. The way that I can affect change is to not be selfish with my story. What I mean is that after the crisis was over and my son was out of residential care, it would have been very easy for me to close the chapter and move on with my life. However, the story wanted to be told and I realized that by stepping out of the shadows, perhaps others would feel that they were not alone.
Writing about mental illness and sharing the story of my son’s crisis is one way that I work to shatter the stigma of mental illness.
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