Culture 26 August 2018
Life has had its ups and downs, but through it all Janet Denlinger, Rod Rohrich and I have been blessed. We wanted to give back and give a voice to a cause affecting women who are not as fortunate as we are.
What we realized is that women are not obtaining the advice and counsel they require to address the continued healing and adaptations that are a consequence of such surgery.
While the treatment of breast cancer has progressed, one third of all breast cancer patients will inevitably have a mastectomy. In addition, more women are being diagnosed with the BRCA gene mutation and will opt for a risk-reducing mastectomy. It’s crucial that the medical community help educate and inform patients about their reconstruction options as an integral part of cancer treatment. To that end we learned that educating women about their post-mastectomy options is of particular importance, especially when considering that up to 70% of women diagnosed with breast cancer are unsure of — or unaware of — their reconstruction options. Many of those who desire this surgery do not have sufficient insurance or other resources to pay for it. And while every woman who has had a mastectomy might not feel the need for reconstructive surgery, they need to consider all their options.
What we realized is that women are not obtaining the advice and counsel they require to address the continued healing and adaptations that are a consequence of such surgery. The mastectomy itself is just a part of the recovery process, both psychologically and otherwise. Whereas the restorative breast surgery is an integral part of total physical and emotional healing for many breast cancer survivors in order for them to feel whole again and to restore their self-esteem.
There are many breast cancer causes and organizations that are dedicated to education, funding research and finding a cure and it has been through their efforts— from charity walks to pink products— that they have provided such a necessary service to the patients.
However, only a handful of organizations focus on providing funding and support for reconstructive surgery. Because of this, we founded the Alliance in Reconstructive Surgery (AiRS) Foundation, a 501(c)(3) non-profit organization.
Our mission is to be a resource and a support system for the women who have lost their breasts as a result of breast cancer, educating them on reconstruction options, as well as their health insurance coverage, and ultimately assisting them with the cost of reconstructive surgery itself, if qualified. AiRS makes it possible for women to consider all options regardless of their economic situation. AiRS also strives to be a resource and provide education about reconstruction for physicians and medical communities, as well as caregivers and advocacy organizations.
To help accomplish our mission, the AiRS Patient Advocacy Program is an essential service for patients, who may not have support systems or their families and caregivers to offer emotional support and help navigate the often frustrating and overwhelming health care system.
Who are our advocates?
Whether or not an advocate has any personal experience with breast cancer, an advocate is simply a caring person who is willing to listen, learn, and help someone who is going through a life-threatening illness.
educate patients about their options following mastectomy by providing resources and referrals.
Being there to lend an understanding ear and offer support and words of encouragement are wonderful gifts to patients who have already endured so much. Advocates make a difference in the lives of these women by supporting those who need help navigating an integral part of breast cancer treatment and recovery.
The primary goal of the Patient Advocacy Program is to:
Advocate and assist patients in navigating the health care system, promote patients’ rights, and speak on behalf of patients when necessary
Ensure that patients receive appropriate and timely care and financial assistance when needed
Educate patients about their options following mastectomy by providing resources and referrals
Provide compassionate support to help women through the physical and emotional recovery from breast cancer, and provide support to families and caregivers
AiRS relies on Advocates who commit to serve to meet the following expectations:
Provide empathetic and sensitive, discreet timely support and interaction with patients
Commit to learn about the various types of breast cancer, breast reconstruction
Understand the AiRS patient application and acceptance process and be willing to help patients through the application process, if necessary
Stay current with information about AiRS
To support or make a donation, visit www.airsfoundation.org
For decades, women have been unknowingly suffering from PSD and intergenerational trauma, but now Dr. Valerie Rein wants women to reclaim their power through mind, body and healing tools.
As women, no matter how many accomplishments we have or how successful we look on the outside, we all occasionally hear that nagging internal voice telling us to do more. We criticize ourselves more than anyone else and then throw ourselves into the never-ending cycle of self-care, all in effort to save ourselves from crashing into this invisible internal wall. According to psychologist, entrepreneur and author, Dr. Valerie Rein, these feelings are not your fault and there is nothing wrong with you— but chances are you definitely suffering from Patriarchy Stress Disorder.
Patriarchy Stress Disorder (PSD) is defined as the collective inherited trauma of oppression that forms an invisible inner barrier to women's happiness and fulfillment. The term was coined by Rein who discovered a missing link between trauma and the effects that patriarchal power structures have had on certain groups of people all throughout history up until the present day. Her life experience, in addition to research, have led Rein to develop a deeper understanding of the ways in which men and women are experiencing symptoms of trauma and stress that have been genetically passed down from previously oppressed generations.
What makes the discovery of this disorder significant is that it provides women with an answer to the stresses and trauma we feel but cannot explain or overcome. After being admitted to the ER with stroke-like symptoms one afternoon, when Rein noticed the left side of her body and face going numb, she was baffled to learn from her doctors that the results of her tests revealed that her stroke-like symptoms were caused by stress. Rein was then left to figure out what exactly she did for her clients in order for them to be able to step into the fullness of themselves that she was unable to do for herself. "What started seeping through the tears was the realization that I checked all the boxes that society told me I needed to feel happy and fulfilled, but I didn't feel happy or fulfilled and I didn't feel unhappy either. I didn't feel much of anything at all, not even stress," she stated.
Photo Courtesy of Dr. Valerie Rein
This raised the question for Rein as to what sort of hidden traumas women are suppressing without having any awareness of its presence. In her evaluation of her healing methodology, Rein realized that she was using mind, body and trauma healing tools with her clients because, while they had never experienced a traumatic event, they were showing the tell-tale symptoms of trauma which are described as a disconnect from parts of ourselves, body and emotions. In addition to her personal evaluation, research at the time had revealed that traumatic experiences are, in fact, passed down genetically throughout generations. This was Rein's lightbulb moment. The answer to a very real problem that she, and all women, have been experiencing is intergenerational trauma as a result of oppression formed under the patriarchy.
Although Rein's discovery would undoubtably change the way women experience and understand stress, it was crucial that she first broaden the definition of trauma not with the intention of catering to PSD, but to better identify the ways in which trauma presents itself in the current generation. When studying psychology from the books and diagnostic manuals written exclusively by white men, trauma was narrowly defined as a life-threatening experience. By that definition, not many people fit the bill despite showing trauma-like symptoms such as disconnections from parts of their body, emotions and self-expression. However, as the field of psychology has expanded, more voices have been joining the conversations and expanding the definition of trauma based on their lived experience. "I have broadened the definition to say that any experience that makes us feel unsafe psychically or emotionally can be traumatic," stated Rein. By redefining trauma, people across the gender spectrum are able to find validation in their experiences and begin their journey to healing these traumas not just for ourselves, but for future generations.
While PSD is not experienced by one particular gender, as women who have been one of the most historically disadvantaged and oppressed groups, we have inherited survival instructions that express themselves differently for different women. For some women, this means their nervous systems freeze when faced with something that has been historically dangerous for women such as stepping into their power, speaking out, being visible or making a lot of money. Then there are women who go into fight or flight mode. Although they are able to stand in the spotlight, they pay a high price for it when their nervous system begins to work in a constant state of hyper vigilance in order to keep them safe. These women often find themselves having trouble with anxiety, intimacy, sleeping or relaxing without a glass of wine or a pill. Because of this, adrenaline fatigue has become an epidemic among high achieving women that is resulting in heightened levels of stress and anxiety.
"For the first time, it makes sense that we are not broken or making this up, and we have gained this understanding by looking through the lens of a shared trauma. All of these things have been either forbidden or impossible for women. A woman's power has always been a punishable offense throughout history," stated Rein.
Although the idea of having a disorder may be scary to some and even potentially contribute to a victim mentality, Rein wants people to be empowered by PSD and to see it as a diagnosis meant to validate your experience by giving it a name, making it real and giving you a means to heal yourself. "There are still experiences in our lives that are triggering PSD and the more layers we heal, the more power we claim, the more resilience we have and more ability we have in staying plugged into our power and happiness. These triggers affect us less and less the more we heal," emphasized Rein. While the task of breaking intergenerational transmission of trauma seems intimidating, the author has flipped the negative approach to the healing journey from a game of survival to the game of how good can it get.
In her new book, Patriarchy Stress Disorder: The Invisible Barrier to Women's Happiness and Fulfillment, Rein details an easy system for healing that includes the necessary tools she has sourced over 20 years on her healing exploration with the pioneers of mind, body and trauma resolution. Her 5-step system serves to help "Jailbreakers" escape the inner prison of PSD and other hidden trauma through the process of Waking Up in Prison, Meeting the Prison Guards, Turning the Prison Guards into Body Guards, Digging the Tunnel to Freedom and Savoring Freedom. Readers can also find free tools on Rein's website to help aid in their healing journey and exploration.
"I think of the book coming out as the birth of a movement. Healing is not women against men– it's women, men and people across the gender spectrum, coming together in a shared understanding that we all have trauma and we can all heal."