Advocacy Blog Series: Narrative Medicine

So what is Narrative Medicine, and how can it help in advocacy?  Continuing from yesterday’s post, I want to explore the communication gap between medical professionals and patients or caregivers.  Unfortunately, there are many cases where a patient or caregiver is afraid to speak up or not sure how to speak with a medical professional.  They may feel ignored or mistreated in some way.  This is not always the professionals fault.  In fact, the burden is often carried equally due to miscommunication, lack of knowledge, or because of other issues.

In my experience as a parent with two sick children.  I have had to be a strong advocate for them.  There were many instances where I was ignored because the professional did not feel I knew or understood my child’s condition.  In fact, my daughter’s heart condition required extremely low oxygen saturation between her first and second surgery.  If her oxygen was turned up, it could flood her lungs and cause serious problems.  One nurse came into her hospital room and attempted to turn up her oxygen when she saw how low her sats were, and I had to assert myself and my knowledge.  She did not want to listen and I demanded she go read my daughter’s chart while I turned the oxygen back down.  Needless to say, she did apologize and a note was put on the oxygen control to warn anyone else.

I had some other problems with incorrect medication dosage, but for the most part, the professionals I worked with were incredible.  In fact, at Denver Children’s Hospital where 3/4 of my daughter’s hospitalizations were, we had doctors who listened and stood by us.  My daughter’s cardiologist always remembered her and us, and that personal touch made me feel like he saw her for the little girl she was, not just a patient.  This is not always the case.  Many people have different experiences.  Professionals are pushed harder to get patients in and out as quickly as possible.  Technologies are introduced that make fields a drop down box and tale the personal storytelling out of patient care.  This is where patients begin to feel alienated in a sterile environment and professionals feel analytical instead of connected.  This is why narrative medicine can help.

Columbia University is the pioneer of the narrative Medicine program, and I highly recommend a visit to their site.  The work they do is incredible and it was headed by Rita Charon.  You can watch her YouTube video below.

In my own Narrative Medicine class with Gillian Pidcock, I learned a great deal about the process and how beneficial it can be for various people.  As a person who wishes to be an advocate and a writer who helps parents and caregivers with sick family members, I see how this process can benefit me.  In health advocacy, often stories of trauma are held onto.  We keep these stories in when they need to be born into the world.  If we can help our patients find a way to express what ails them through writing their narrative, we can lessen the heavy load they bear.  If we can help medical professionals let go of the clinical side of their job and connect to stories where they were challenged by a situation or where they felt the humanity in what they do, we can help professionals connect to their patients a little more.  We can also help people let go of the stress these stories contain.  Narrative Medicine can benefit patients, caregivers, family members, professionals, and anyone else who works in this field and more.

As an advocate, think about the ways narrative can spread.  If the medical field can benefit, so can social work, law enforcement, psychology, and so much more.  As humans, we want to open up, share our stories.  It is natural and beneficial to do so.  Please share any comments you may have on this important subject.

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Advocacy Blog Series: Advocacy Defined and Explored in Health Care

We hear about advocacy often, but how can we define it?  Advocacy is a part of various careers, and can become a massive part of one’s personal life.  The simple definition is the way in which a person influences others to take up a cause, support a policy, or help with decision making.  Advocates work in social work, politics, law, public relations, policy making, education, medical fields, and many other fields.  Advocates can be the ones standing by children who have been abused as they walk into a courtroom, they may help special needs children get the educational help they need.  Mentally ill individuals rely on advocates as they face treatment, juvenile offenders need advocates as they face the criminal justice system.  The fact is, advocacy is everywhere.  It is a part of society as we seek to help those who need help.  Some advocates are removed from the situation, but help to write the laws that will ultimately protect individuals.  Some are inspired by an experience in their lives that helped them to see what changes were needed.

Why is advocacy so important?  It is important because many systems are broken.  As the world continues to grow, technology advances, and societal expectations change, more individuals begin to see the need for change.  Because everyone is different, one person may prefer the hands on work with individuals who need their help, and others may prefer to lobby and become an activist.

I have seen many systems that need change, and I plan to work in advocacy.  However, I am still trying to determine how I can best make a difference.  I love to write and plan to write a book to help parents with sick children to become advocates for their children, but as I have moved along in life, I have found even more battles that need to be fought.  I have found the medical system to be broken for both physical and mental health.  I have seen my parents as caregivers struggle to get the correct care for our loved ones.  I, as a mother to two special needs children, had to fight the system.  This should not be the case.  Parents and caregivers have enough stress, and the healthcare system  is supposed to make people better, not worse.  The bigger the divide becomes between caregivers, patients, and professionals, the more the care is affected.  Humanity seems to be a thing of the past, and I am finding that I wish to fight for better communication between these two sides.  How can a bridge be built when the funding is supporting a bigger gulf.

This is a topic which is finding its way into more places from blogs, to news, to a whole field at Columbia University called Narrative Medicine.  People do not want healthcare to continue on this path, they want to connect to professionals.  Many professionals find that they do not have the time to care for patients like they thought they would.  If both sides are unhappy, the system is not working, and people need to rise up to initiate change.  Like any great battle, it does not happen quickly, it must be fought from various angles, and this is why more people need to become advocates.  More people need to be strong, and stand up for their beliefs, their loved ones, and themselves.  I would love to hear others comments about this issue.

Advocacy Blog Series Begins Tomorrow!

I want to say thank you to all of my followers!  I have decided to continue the process of writing a series each week.  I have had a great deal of positive feedback, and it allows me to look at various issues even closer or from different angles.  I did the Empowering Women Series this week, but I want to tackle something very near and dear to me this week — Advocacy.  Advocacy is incredibly important in various careers, but also on a personal level.  People advocate for themselves, for family members, for friends, and neighbors.  It is something that fills our lives in ways we do not even realize.  I will write about various aspects of advocacy while also relating personal stories or experience from my own life.  Please join me this week as I journey  into this important topic!

Empowering Women Series: Gratitude

Today is Thanksgiving, and it carries with it the traditional aspect of giving thanks, or showing gratitude for what we have and for the people in our lives.  This is an important tool when it comes to empowering women.  It may seem like common sense that we should be thankful, but sometimes, we do not see the various ways to express gratitude or realize who we should thank.  When women become empowered, it is because they have accepted support when it was available, reached for opportunities when they were in grasp, and they developed the skills necessary to become strong, determined, knowledgeable, and confident.  As women flourish, they should express gratitude for the opportunities and support they have had because it helps them to remember where they began, and to realize there are other women that need the same support.  The expression of gratitude can lead to the act of giving.

I am a woman who was blessed with a group of family and friends who supported me.  They encouraged me, stood beside me when I made difficult decisions, and listened to me.  Without these people, I may not be where I am now.  It takes a lot of strength to rise from abuse to become confident and accomplished.  I worked hard, but it is important for me to recognize the people who guided me along the way.  I have had professors and people in my network who validated me, and pushed me harder.  These people deserve my thanks.  I have been presented with opportunities that have made a huge difference in the direction of my life.  I had to grab the opportunities, apply for them, or work for them, but the fact remains that without them being available, I would not be where I am.  Part of being empowered is the realization that success, accomplishment, etc… is a group effort.  We all gain when we give.

Three types of gratitude can help you to bolster empowerment:

1.  A simple thank you to mentors, teachers, advisors, employers, family, or friends who have helped you become strong can not only strengthen your relationship, and it can inspire them to continue helping others.

2.  When you are grateful you may be more willing to give back and help another woman rise from abuse, lack of self-esteem, or any other situation that limits her.

3.  Any connection made when networking should be recognized, and if it was from a speech, or someone who offered stimulating conversation, a thank you email can encourage a stronger connection and make them more willing to associate with more rising women.

This is only a small list, and there are so many ways to express gratitude and various reasons to do so.  The important thing is to realize we are not born skilled and ready to take on the world.  We all take various paths, but there are people and experiences that help to make us stronger.  Without recognizing this, we miss an opportunity to forge stronger relationships and to give back.

Empowering Women Series: International Day for the Elimination of Violence Against Women

Yesterday was the International Day for the Elimination of Violence Against Women.  I could have posted yesterday about violence and how desperately we need to fight against the abuse that strips women and girls of their human rights.  However, I waited until today to make a point.  Violence, abuse, and inequalities plaguing women and girls lead to them living in poverty, contracting diseases, losing any chance for an education, and suffering indignities beyond comprehension.  Yet, the day recognizing this issue has past, and people who are not in this situation or working with women who have been in this situation can move on with their lives.  They thought about it, but now, they can move on until the next campaign or recognition takes place.  How does this fix the problem?

Awareness is key to finding resolutions, but if there are only certain days that this problem is brought to light, people will forget.  It is easy to forget what is not seen.  It is like the saying, “out of sight out of mind”.  The women and girls that are enduring appalling conditions right now need help.  The woman in the house down the street that hides her bruises with makeup, and looks down in the hopes people will not see her eyes where her story lies in wait, lies in wait for someone to rescue her.  She needs help right now.  The mother, sister, cousin, friend, and aunt who carry their abuse in silence need your help to reassure them their voice can and should be heard.

I was one of these women.  My first marriage was filled with physical, mental, and sexual abuse. I was forced to stay in the shadows of our apartment.  I was controlled, used, and treated as though I was nothing.  I lost every bit of self-esteem I had and I only left after my son was born because I knew he was worth more.  I did not recognize my worth at the time because that is what happens to women who are subjected to violence regularly.  I was lucky to have family who stood by me and helped me when they found out.  There are women who do not have anyone, and they are waiting for someone to find out, to help them.  I am strong now, and this is a topic I am very passionate about.  This is an issue that needs to be addressed daily because countless women are hurt daily.

When we make the world a place that is safe for women to open up about the pain and suffering they endure so they can find peace and protection, the world will become a better place.  When women are free to express themselves, get an education, and lead in their jobs and communities, their families, companies, and communities become stronger.  We need to be willing to speak up, help others, and hold the hands of those weakened by violence.  This is an international issue, but we can start in our own communities.  Support a women’s shelter, speak to abused women and offer them your strength and support, be the one who reports abuse if it is happening, and you can make a difference.

Empowering Women Series: Confidence and Assertiveness

Women have spent years being pushed down when they try to rise up.  Being assertive as a women leads to people calling you “bossy” or saying you “nag”.  These terms do more harm to the movement of empowering women, yet they continue to thrive.  If a man is assertive, he is strong and confident.  There is never any question when a man challenges a poor job offer with a negotiation.  In fact, it is expected.  Women will typically shy away from negotiating.

Whatever terms are used, the problem begins early and needs to be addressed early.  Young girls and teenagers need to know that they can do amazing things if they believe in themselves and are willing to take chances.  These girls are impressionable and with the proper influences, they can flourish.  Schools are strapped as the economy is still trying to bounce back, and this can lead to fewer resources in the schools to help push young women to succeed.  While a small percentage may have the guidance to do well and apply for college, others fall through the cracks.

At what point do we as a society say enough is enough?  When do we finally work as communities in bolstering the young populations to become leaders.  If we can reach these girls early on and provide them with opportunities in business, leadership, science, math, and medicine, we may see more young women, with a voice, ready to make a difference in the world around them, and beyond.  It takes confidence to put yourself in front of someone and to say “I have what it takes to be successful.”  I know because I struggled with this for many years.  I did not believe in myself until I was guided by the wonderful people in my family and at Cedar Crest College.  It took me longer to get to this path in my life, but once I found my inner strength, I was not letting go.  This is what we need to do, help young women find their inner strength.

We can make a difference now.  Many of you have children, are educators, or work in community outreach.  Use your influence to help the children you are connected to to find what they are passionate about.  Help them to realize their potential, and push them to excel.  You may not change the world, but you may change a life, and that person may change many lives, and the ripple effect can continue. This first step can make all the difference.

Empowering Women Series: Empowering Women Through Education

This blog post continues the Empowering Women Series by exploring the influence of education and how it can empower women.  As a woman, I have been pushed down many times in my life.  I did not fit into the mold popular girls fill in high school.  I spent most of my pre-teen and teen years trying to understand and help my mentally ill mom, and dealing with my own emotional breakdowns.  I did not value education as much as survival because I was not ready.

After high school, I realized there was a whole world out there.  I had spent so many years in my own narrow perspective and I was not as prepared to deal with life.  I made poor decisions because I had low self-esteem.  I craved love and attention, and I found it with an older man.  I married him at 18 years old.  He turned out to be abusive.  My life was contained within the tiny expanse of our apartment because he controlled me.  I will share more of this element of my life in my post on abuse this Wednesday.  I was defeated, and the only reason I left was because I valued my son’s life, not my own.

It is easy for girls to fall into the stereotypical worlds presented to them with marketing, toys, and television.  The media children are exposed to is exponentially high due to technological advancements.  While there are some improvements, and colleges tend to have more female students, there is still a lack of confidence that pervades women.  Men are more likely to be assertive and to negotiate when it comes to salary and other job perks.  Men are more likely to have mentors to teach and guide them into executive positions.  Women are more likely to be looked over for a job because they are of child-bearing age, or to be discriminated against if they are an expectant parent.  There are laws to protect women, but there are still many cases being brought forth because the playing field has not been leveled.

Education is becoming more and more critical for financial success and personal growth.  It is important for women to recognize that classes and homework are only one aspect of this education.  Achievement requires determination, and women willing to go the extra mile.  The classroom provides the knowledge, but a truly valuable education requires immersion in leadership opportunities, and networking.  I am currently attending Cedar Crest College, an all-women day college, and I have found the potential for growth is immeasurable.  This college, http://www.cedarcrest.edu/ca/index.shtm, is one that is valued for its relationship in the community, the support of donors, the recognition as a best value regional college in the north by US News & World Report, and because it empowers women.  In fact, the Women’s College Coalition website, http://womenscolleges.org/, produces encouraging statistics about the benefit women have when attending a women’s college.  I can say from my experience, Cedar Crest College has proven these statistics to me.  I am more confident, I feel ready to engage others in a career, I feel like I can lead, speak, and perform well.

Whether women choose an all-women college, or co-ed, they need to be ready to become assertive and to work hard.  Networking is crucial.  The career world still has a glass ceiling in some fields, and a gap in pay.  It is time for more women to gain the educational background, leadership experience, and drive to initiate change in the world.  From the cities and towns they live in, to the state, and federal level, women can make change.  Raise your voice, and join the cause for empowering women through education and more!

Empowering Women Series: The Truth in Numbers

I want to start this series by looking at data to determine where the weaknesses lie for women around the world, and specifically, in The United States. To empower women, we have to figure out how the structures of society, the marketing strategies, the government and private businesses, and perceptions weaken them. We cannot begin to fix a problem without understanding it. Moreover, even when we do understand it, we can only fix it one step at a time. The process for change is usually a long one, but with attention, the steps become larger, and the number of people involved in implementing change grows. Many organizations release campaigns as a catalyst for transformation, and one, which was recently brought about at the UN, is called HeforShe. If you have not seen the incredibly moving speech presented by Emma Watson, I have provided it for you.


What we need to understand is that women and young girls are typically brought up to see the world in a certain way, to embrace emotion instead of toughen up, to be weak, to not argue, and to do what we are told. The list continues. Boys are taught to be assertive, to be strong, to not cry, and so much more. We are all capable of the same things, with a few exceptions; yet, we force ourselves, and our children into specific roles, which could ultimately hinder us from becoming successful. If girls cannot grow up as assertive, how can they forge their way into a position as president? If boys cannot express emotion, how can they connect with patients as a therapist?
What does the data say? When studying the world overall, the website for The UN Women, looking at available data, finds that “Between 15 and 76 percent of women are targeted for physical and/or sexual violence in their lifetime” (UN Women, 2012). These numbers vary greatly across countries because the underdeveloped countries see more violence against women. We know young women are at a higher risk of being assaulted, but the numbers are staggering, “Worldwide, up to 50 percent of sexual assaults are committed against girls under 16” (UN Women, 2012). There are girls suffering from genitalia mutilation, and, as seen with the current crisis in the middle east, marriage and assault for girls as young as age 7. Human trafficking, which has found its way into even highly developed countries, has become an extremely profitable industry.
What these numbers show us is that violence is prevalent against women, and this creates an element of fear. If women are treated as objects, not provided an education, and expected to conform to inequality, how can they rise to fight or even know they have something to fight for?

The United States

          While we are free from much of this in The United States, there is still a high level of assault and abuse, sexual harassment, and inequality in the workforce. While The United States celebrates a society built on principles of equality, the numbers show otherwise. Women are finding their way to the top, but not in the numbers that should be expected.
In The United States, according to The National Coalition Against Domestic Violence (NCADV), one in four women will suffer from domestic violence in their lifetime (2007). Even more alarming, the Rape, Abuse & Incest National Network (Rainn) reports “an American is sexually assaulted every two minutes” (2009). These numbers show how much abuse and assault against women is a part of our society, and it does not even address child abuse or emotional abuse. With statistics like this, it is easy to see how so many women still do not speak up in a job when it could lead to promotion, or how women may feel intimidated in a board room full of men.
What do employment statistics show for women in The United States? According to Employment Law for Business, while “47%, nearly half of the workforce, is female…women earn 75% as much as men at all levels of educational attainment” (Bennett-Alexander & Hartman, 2012, pp 344). We know that more than half of college students are women, yet, “3 to 5 percent of top managers are women” (Bennett-Alexander & Hartman, 2012. pp 347). These statistics are alarming, and something needs to change. There are various opinions on why women make less, and why fewer women hold top executive positions, and we will begin to explore this from an educational perspective tomorrow. If you would like to see me add something to this discussion, please comment, and please feel free to join in and discuss this important issue in the comments.

References

Bennett-Alexander, D. D., Hartman, L. P., (2012). Employment Law for Business. New York:McGraw-Hill. Print.
RAINN, (2009). Statistics. Rape, Abuse & Incest National Network. Retrieved From https://www.rainn.org/statistics
UN Women, (2012). Fast facts: statistics on violence against women and girls. UN Women. Retrieved From http://www.endvawnow.org/en/articles/299-fast-facts-statistics-on-violence-against-women-and-girls-.html

How to Transform Caring!

In the caregiving world, caring can be many things, but we often assume it is “just” the task of daily care, grooming, medication control, nursing, and providing basic needs.  The problem here is that these tasks are often cast aside as unimportant, or carers believe their role is, as my mom says, “just a caregiver”.  Caregiving includes everything above as well as advocating for another, listening to them, helping them, loving them, and being with them.  The role of a carer must be based on fulfilling human needs, including the emotional ones, because people who are weakened by illness or age need more.

My grandfather has Alzheimer’s, and he is tethered to reality by only a few things.  My parents spend their lives making sure he is loved and cared for, and this included the emotional support.  He lost his wife a year ago, and she was one person who grounded him to reality.  It was difficult because he would ask for her each day, and my parents had to relive her death along with him.  This is where caregiving becomes more about the actual caring.  They have remained patient and loving.  He has since improved slightly and is grounded by my parents and his dog, Honey.  While he may forget a great deal, he notices his surroundings, my parents, and his little terrier.

His world was turned upside down again as his dog, Honey, died this morning.  This is when I saw how difficult caring could be because while my mom was upset by the loss of Honey, she was absolutely torn knowing she would have to tell her father about his little dog.  They placed her on her cushioned bed, and put her on his lap so he could mourn her while actually seeing her.  He needed to make this connection, and perhaps it will keep him from asking about her each day in the coming weeks.  My mom cried, and told me she is surrounded by death, and she knows there is more to come with her father so frail, and the fact that she also cares for my aunt who is dying of a rare cancer.

This leads me to the need for us to transform caring.  We have caregivers for the sick and elderly, but who is caring for the caretakers.  They are shrouded by death, loss, fear, illness, pain, and so much more each day.  They struggle to cope and carry on with their lives.  They face job and financial struggles, a massive loss of privacy, stress, and exhaustion.  There are not enough resources, and in many families, support is limited.  Caring needs to be transformed into a more comprehensive understanding on a societal level.  These issues need to be brought front and center at this time when baby boomers are aging, and the demands for caregivers will rise.  If not, we will see an increase in demand placed on family caregivers without the framework of support and this will lead to higher levels of stress related illnesses.  We need to begin a dialog about the health care system and reliance on caregivers now.  And, if you know a caregiver, support them if you can.  Offer to help by giving them a break, making a meal, running an errand, or just listening to them.  They need support too.

What Advocacy Means to Me

There are more and more non-profit organizations being created, more policymakers seeking to advocate to prevent specific injustices, and more people recognizing there are problems in our society, our laws, our beliefs.  I began to notice these problems early on as I grew up in a home painfully divided by mental illness.  I saw, at a young age,  the struggles that are so prevalent in the structures of mental health treatment in the United States.  When families are left, stripped of normalcy, to cling to any shred of hope, there is a problem.

I have learned a great deal about the need to advocate for oneself and for loved ones when navigating the health care system.  As an adult, I have been thrown back into the torment of hospitals, insurance, and fear as my both of my children have serious conditions which require specialized care.  In the process, I have seen parents and caregivers lose themselves, unable to fight or not sure how.  When family members are traumatized by the serious illnesses of loved ones, they should not be confronted with a system as convoluted and stoic as what we have.  While we have received excellent care, we have also faced atrocious care and callous individuals.  We have been placed in situations that devastated us.  We have had to learn the “business” of health care because the humanity disappeared.

This leads me to the idea of advocacy.  I believe advocacy begins with providing a voice for those who do not have one.  It is working on behalf of others who need your help.  Caregivers have to be advocates, as well as teachers, lawyers, policymakers, non-profit representatives, etc…  Advocacy is growing as we realize the need for people to represent various groups of people.  It could be under-advantaged children, abuse victims, parents with an ill child, caregivers of elderly parents, and the list goes on and on.

For me, advocacy has become an important aspect of my life because I have had people advocate for me when I needed it.  Then, as I became stronger, I advocated for myself, and my children.  Now, I wish to use what I have learned to advocate for others.  The more people open their eyes and see the situations that need to be changed, many of which are right around the corner or even in our own homes, the better our world will become.  If I do not step up and work for change, who will?  And, if you see something that you could lend your voice to, speak up.  If you don’t, who will?