Posts in Brave New Normal
Being Fair Reporters: Self-advocating about Our Chronic Illnesses with Doctors

A Conversation with Allie Cashel

By Val Walker

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Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial (North Atlantic Books) and is the co-founder and president of The Suffering the Silence Community, a nonprofit organization dedicated to breaking the stigma surrounding chronic illness and disability. Since starting work with STS, Allie has been invited to facilitate workshops and to speak about disability, inclusion, and storytelling at events around the country. She has appeared in a number of global media outlets, including Good Day NY (Fox5) and NowThis Live News, and has presented her work at a United States Congressional Forum.

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Introduction

Communicating with doctors about a chronic illness takes practice, patience, and honesty. But in a rushed, crowded and hectic medical setting, we often skip information about our symptoms or get distracted and confused. Are we being fair reporters for ourselves about our symptoms and our own nuanced observations? It’s a fine, delicate art to accurately and fairly describe what is going on with our bodies, especially when we don’t understand it. And worse, if we have multiple chronic illnesses or a rare illness, we could feel overwhelmed trying to grasp what is happening to us. We can barely wrap our minds around the troubling problems our illness is causing in our daily lives, let alone do a good job of describing what the heck is going on to our doctor!

Many women like me manage several chronic illnesses at once, which overlap and complicate our symptoms and patterns. For example, I suffer from multiple autoimmune diseases, as well as other endocrine and cardiovascular diseases. Trying to analyze my symptoms can be as delicate as reading tea leaves, yet I must be as fair and concise as possible when I approach a doctor. My radar is on high alert for any sign that the doctor’s eyes are glazing over when I try to briefly outline the many overlapping symptoms—I even apologize for “having so many problems.” Indeed, my anxiety spikes long before I step into the doctor’s exam room. I can feel my blood pressure go up just thinking about how to describe my unrelenting symptoms to my doc (“Here we go again…”)

Allie Cashel has struggled with Lyme disease since her teens, and spent years feeling dismissed and misunderstood by doctors. She conducted a series of interviews with Chronic Lyme patients in New York and around the world, revealing a complex world of suffering within the Lyme community.

But in the past few years, she sees heartening signs that medical providers are tuning in more to the disease. With her helpful and informative website for living with chronic diseases alongside Lyme disease, she offers tips as well as reassurance for those of us who frequently see doctors while battling chronic illnesses that play havoc with our bodies.

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1.     Do you think medical providers are “getting it” more about Lyme disease these days?

 

Allie: Fortunately, I’ve seen a difference in the past five years. There is more awareness and a more comprehensive view of Lyme disease. There is a broader understanding about the scope and intensity of the disease and how it affects our lives. I’ve witnessed how my fellow Lyme disease survivors are not undergoing as much dismissiveness and misunderstanding from doctors about what we suffer. I wrote about this sense of silencing in my first book about Lyme disease, Suffering the Silence. Thankfully, I see changes for the better.

 

2.     What would you suggest for approaching a doctor about suffering a chronic illness, especially if it is a rare illness, or you’re dealing with subtle early symptoms?

 

Allie: I have lots of experience going to doctors with strange, subtle symptoms with Lyme disease. And I have heard from hundreds of patients coping with chronic illnesses with nagging, constant problems. Here is a list of what I think is crucial for sharing information with our providers:

  • Write down your questions in advance—think ahead about what you want to find out and prioritize your questions.

  • Track the symptoms and patterns of your illness, and if needed, keep a record of vital signs (could include blood pressure and pulse tracking, sleep and diet patterns, urinary and bowel patterns, pain patterns, stiffness and fatigue patterns). This might involve keeping a medical journal of the patterns of your symptoms.

  • Research (Google) the treatments for the illness and learn about the illness.

  • Know the landscape of what you need that is “out there” for treatment.

  • Help to inform your doctor about the treatments you are interested in.

  • Bring another person with you if you feel you might be overwhelmed or awkward with the communication.

3.     What if the treatment is not working or you are not sure what to say to your doctor for follow up?

Allie: First and foremost: It is important to be patient and wait at least a few weeks (even months) for treatments to take effect. Continue to track your symptoms. It might be useful to talk with your doctor about symptom relief, at least to help temporarily until more is known.

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4.     Can you tell me a story about how your organization, the Suffering the Silence community, has helped someone communicate better with her doctor?

 

Allie: Our Suffering the Silence community holds retreats for people to gather face-to-face to talk openly about their chronic illnesses. One of the benefits of our gatherings is that we can problem-solve about communicating with our medical providers and learn how to advocate for ourselves.  

One of our retreat participants was a woman suffering from endometriosis who felt her doctors had not responded well to her and did not listen well enough. By talking in greater depth and in detail about her problems at our retreat, she became more vocal and articulate about her condition. And best of all, she was able to learn what she needed to look for in a new doctor. Fortunately, some of the retreat participants were able to describe their positive interactions with their own doctors and offered concrete examples of what a healthy relationship with a doctor looks like.

 And here is the key: We need to ask ourselves, “What does a healthy relationship with a doctor look like?”

Our retreat participant with endometriosis was able to identify what she needed to look for when choosing her new doctor. Here is a check list of the basic questions she learned from our retreat:

  •  Does the gender of the doctor matter to you? (Our retreat-goer identified that she preferred a female gynecologist.)

  • Does your doctor allow you to feel comfortable enough to ask “stupid questions?” We need an open-minded doctor—for an open exchange of information. We often suppress our questions because we feel embarrassed that we don’t know enough. It’s vital that we don’t feel judged.

  • Does your doctor take the time you need to fairly describe your situation—more than 15 minutes if you need more?

  • Do you think it would be helpful to bring someone with you to help advocate, ask delicate questions, and retain the information? (For more complicated or difficult visits with our doctors, such as when getting test results or pathology reports, it’s normal that we need support when trying to absorb powerful, life-changing information.)

5. Your first book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial has helped thousands of Lyme survivors find their voice and learn to self-advocate about their disease. I’m excited to hear that you are a co-author with Dr. Bernard Raxlen, a Lyme disease expert, for a new book coming out this July, Lyme Disease: Medical Myopia and the Hidden Global Pandemic. Can you tell us more about this project?

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Allie: This is one of the first projects of its kind, bringing physicians and experts together from around the world to address the epidemic of Lyme on a global scale. This book acknowledges just how many people and how much need there is to address this issue around the world.

 Book description: Based on years of diagnosing and treating this growing problem in NY City, Dr. Raxlen, together with ‘expert patient’ Allie Cashel and a team of international contributors, provides a road map for individuals who suspect they have been infected and are lost in the ‘medical maze’ of Lyme and other tick-borne diseases, searching for a diagnosis and appropriate treatment.”

Read more on Allie Cashel’s website:  www.sufferingthesilence.org

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March, 2020, with Central Recovery Press. Learn more at www.HearteningResources.com

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Celebrating Empathy in Action: An Interview with Marisa Renee Lee

An Interview with Marisa Renee Lee

By Val Walker

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No matter how difficult her day might have been, Marisa’s best bet for beating the blues is to read stories of people helping others. She loves to learn how people turned empathy into action with kindness, thoughtfulness and resourcefulness. Following her passion, Marisa and her friend, Jackie Scharnick, launched a website in 2018 called Supportal which is dedicated to publishing first-hand accounts of friends helping friends who are experiencing life-changing challenges. Supportal is devoted to celebrating the infinitely possible ways that empathy calls us into action--as caregivers, as comforters and as wonderful friends. In short, as Supportal’s tagline says, “Being there starts here.”

About Marisa

Marisa Renee Lee is a graduate of Harvard College and an avid Green Bay Packers fan. She resides in Falls Church, Virginia with her husband Matt and their dog Sadie.

In 2007, Marisa founded The Pink Agenda, a breast cancer non-profit, in honor of her mother Lisa. Almost a decade later, The Pink Agenda is now a national organization of young professionals committed to raising money for breast cancer research and direct care service programs in partnership with The Breast Cancer Research Foundation. 

Today Marisa is a cross-sector leader dedicated to engaging the private sector to help solve public problems. In addition to her work on Supportal, Marisa runs a social impact firm that allows her to support a variety of institutions on organizational design and development, public-private partnership strategies, change management, and stakeholder engagement. Until 2017 Marisa served as the Managing Director of the My Brother’s Keeper Alliance (MBK Alliance), a nonprofit born out of President Obama's call to action to address the barriers to success that boys and young men of color (BYMOC) disproportionately face along the life path. Through her work with MBK Alliance, Marisa leads a collaborative, cross-sectoral movement that unites business, philanthropy, nonprofit, and community leaders, to increase pathways of opportunity for BYMOC.

 Photo: Marisa with her mother

About Supportal 
 

Supportal’s mission is to show people how to turn empathy into action. Marisa learned much about the wisdom of empathy at a young age as her mother’s primary caregiver as she struggled with multiple sclerosis and eventually succumbed to breast cancer. She and her friend, Jackie Scharmick, a survivor of leukemia, founded Supportal to help others cope with demanding ordeals where we find ourselves strapped, isolated and overwhelmed. Marisa and Jackie are committed to ensuring that “no one will have to go it alone.

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A Conversation with Marisa

Val: What brings you joy in your work with Supportal?

Marisa: Supportal’s mission gives me joy: Helping people help others. I love reading people's stories of kindness, thoughtfulness, and comfort. Supportal gathers stories of people helping others who are going through hard times. It brings me joy to know that good things are happening out there, and that people are really showing up, not just making vague promises. People need encouragement, but they also need to celebrate the action that has been taken—the difference it has made in their lives. We need to celebrate empathy in action.

Val: How do you see the internet and social media helping to bring people together around difficult issues such as illness, grief, loneliness, or other losses?

Marisa: One simple example: My friend from years ago shared his story on Facebook Messenger about losing his father. I hadn’t heard from him for so very long, and I didn’t know he’d lost his father, the only living parent he had in his life. It was great to hear from him that all of my sharing about grief and loss made him feel less alone in his own grief. It reminded me that the online spaces—Supportal, social media, etc., can be a great way for people to find connection with others going through similar experiences. No one needs to be alone.

Val: Do you think the internet and social media can cause social isolation?

Marisa: If young people, especially children and teens, are onscreen too much of the time, I think it can be damaging for their social development and limits their social skills—just being able to have conversations. Also, social media can set us up to believe in unrealistic expectations--standards that we can never live up to. It's isolating to feel that we aren't living the way we think we are "supposed" to be living. That’s why I think it’s important for us to share real stories online like the ones found on Supportal. So, yes, there can be a downside to social media, but at the same time it can play an important role in bringing people together. It really is all a balancing act.

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Val: What is in store for Supportal?

Marisa: I'm developing Supportal to be a one-stop-shop for what to do when something bad happens to someone you care about. If someone we love suffers from a divorce, a miscarriage, a job loss, or a death, what can we say and do? How can we help? Supportal provides readers with first-hand accounts of people who have been through a life-changing challenge and share what helped them most. We provide ideas for gifts, goods, services, and practical tips for how to show up for those in need.

Val: It’s heartening that Supportal teaches us through stories that show us how to support people in distress. There’s nothing like real-life experience for how to comfort others!

Marisa: Right. Stories are wonderful for giving examples of empathy in action, how to respond to our friends and loved ones who are in difficult circumstances. Stories have a way of showing us what to do. Stories are about challenges and how we face them—but we don’t have to be alone facing those challenges-- let’s celebrate the ways we are supported by others! That’s why I co-created Supportal. We don’t have to do it all alone.

Val: Thanks for sharing your time with us! 

Marisa: Thank you--this was fun!

More about Marisa

Marisa’s background is remarkably extensive, and I would like to share more here

In 2010, Marisa joined the U.S. Small Business Administration (SBA) as an appointee in the Obama Administration. During that time, she was able to begin to combine her passion for service with her finance and small business background. At the SBA, Marisa focused on entrepreneurship and access to capital in underserved communities. Marisa supported the Agency’s program offices on outreach, restructuring and creating new lending programs, and the formulation and implementation of policies to promote entrepreneurship. Marisa also coordinated minority business engagement activities across the Obama Administration. Additionally, Marisa spearheaded a series of Urban Economic Forums co-hosted by the White House and the SBA. These forums connected thousands of urban entrepreneurs to public, non-profit, and private sector business development resources.

In 2013, Marisa accepted a position with the White House Domestic Policy Council as a Senior Policy Advisor for Urban Affairs and Economic Mobility. Marisa directed all engagement efforts for the President’s Ladders of Opportunity and Promise Zones initiatives. Marisa later served as Deputy Director of Private Sector Engagement at the White House where she oversaw public-private partnerships and relationships with the business community on behalf of President Obama.

In 2016, Marisa was recognized in the Chronicle of Philanthropy 40 Under 40 as a “Rabble Rouser for Obama.” In 2017 she was named a member of the Ebony Power 100 amongst other Community Crusaders she greatly admires. In 2018 she was a contributing author to the book Modern Loss, a series of candid stories and illustrations on grief. In addition, she has been a featured speaker at several forums including SXSW. Marisa has also written op-eds on race, opportunity, and economic mobility for CNN, Philanthropy News Digest, News One, and other outlets.

Resources

Supportal

My Brother’s Keeper Alli

The Pink Agenda

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Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

Courage Is Contagious

An Interview with Dr. Anne Hallward

By Val Walker

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ABOUT DR. ANNE HALLWARD

Dr. Anne Hallward is the host and founder of Safe Space Radio and a board-certified psychiatrist in Portland, Maine. Anne’s interest in difficult subjects began in her teens, when she noticed how few adults around her seemed to be talking about intimate or difficult subjects. Formerly on the faculty at Harvard Medical School and Cambridge Hospital, she designed and taught courses on death and dying, cultural competence, sexuality, and psychiatric interviewing, and has published on death and dying, cultural bias in medicine, sexuality, and hunger in the Philippines and Bangladesh. Anne is the recipient of the Ulrich B. Jacobsohn Lifetime Achievement Award from the Maine Association of Psychiatric Physicians, the Jeanne Spurlock Social Justice Award from the Association of Women Psychiatrists, and the Exemplary Psychiatrist Award from the National Alliance on Mental Illness (NAMI). She has also been recognized for her work in radio with a Gracie Award for Best Host of a Local Radio Show. Anne speaks internationally on stigma and shame, traumatic silence, and voluntary vulnerability as a form of leadership.

INTRODUCTION: WHY I WANTED TO TALK WITH ANNE

Could there be anything lonelier than not being able to talk about something terribly difficult—something that no one feels safe talking about? One of the greatest causes of social isolation is carrying the burden of stigma, shame or silence. We need safe spaces, or safe people, for sharing what is keeping us isolated and ashamed. Safe spaces are essential to breaking through the walls of isolation. I’d heard of Safe Space Radio in the years I’d lived in Maine yet had never listened to it until I moved to Boston a few years ago. Anne Hallward, a psychiatrist, was the host, so I’d wrongly assumed it was for issues about mental illness until I recently discovered it’s for talking about anything that’s hard to talk about.

The first thing I saw on Anne’s website for Safe Space Radio says it all: The show about the subjects we'd struggle with less if we could talk about them more. Heartened after reading her engagingly informative website and listening to a podcast, I reached out to her, first with an email, and then with a phone call. She graciously answered, and we spoke right away.

I was grateful that Anne could take time for an in-depth conversation about what it takes to create a safe space, and how safe spaces help us break through isolation. Our conversation alone was powerful enough to give me a boost to be more courageous in “going there” with the topics we usually shy away from. After speaking with Anne, I have a new motto: Courage is contagious.

INTERVIEW WITH DR. ANNE HALLWARD

Val: Since launching Safe Space Radio in 2008, you've interviewed hundreds of guests. Though you’ve covered a wide range of compelling topics, has there been a common, prevailing message from all your guests through the years?

Anne: Yes, there is a common message. People have a wish to turn their struggles into a gift for others. They give voice to hidden and silenced stories in order to help others. We started out with a focus on reducing the stigma of mental illness, so I talked with many people who had struggled with depression,  anxiety, or addiction.  Each guest wanted to share their story because they didn’t want others to feel as alone as they had.  They wanted to help to reduce shame and stigma.  Soon we began to include a much wider range of topics including homophobia, racism, sexuality and death and dying, and each guest brought the hope that the story of their struggle could be freeing to others.

Val: Because we all have a sense of what a safe space means, I would love to know what safety means to you.

Anne: I used to think that safety referred to the absence of physical threat. But now I think of it more internally, as the feeling of being able to be fully oneself. A common threat to a sense of safety is shame, and the forces, both internal and external, that tell us that we are not good enough.

So, safety begins inside ourselves and then extends to our personal relationships, our communities, our culture, and our nation.

Safety means being able to reveal our whole selves to each other and that entails two important things: feeling able to share our vulnerability as well as our strengths. The invisibility of either side is painful, so being safe means we are free to express both parts of ourselves. For example, when thinking of refugees, we often only see their suffering and don’t see their gifts. They had to flee their country, arriving here as people of color, needing help. The lens of a stereotype can blind us to their extraordinary gifts. For women, and people of color, and those with disabilities and other marginalized identities, safety is not only about honoring difference and vulnerability, it is about seeing and respecting strength.

Sharing our vulnerabilities as well as our gifts also applies to the topic of asking for help. I’ve learned from my guests that we avoid asking for help because we are afraid that our needs will define us. We fear that people will only know us through our needs or vulnerabilities. Indeed, if either our gifts or our vulnerabilities are invisible, it’s very painful. If I trust that you can hold both sides of me in your mind, and we can fully know each other—then that’s what safety means.

Val: I’ve never thought of safety in that way—to be able to show our vulnerabilities as well as our gifts. So, when you have a guest on your show sharing a painful ordeal in her life that was stigmatized and shamed, her strengths still shine through.

But, speaking of stigma, can we ever get rid of it?

Anne: Erving Goffman (a well-known sociologist) says, “Stigma is a sense of spoiled identity that you cannot wash off.” That’s why we need to share our strengths at the same time we share our vulnerabilities, so the needs don’t end up defining us in a stigmatized way. We need to see each person as whole. Safe Space Radio is one public health approach to fostering greater empathy and understanding in order to reduce stigma. As the famous gay activist, Harvey Milk, once said, “This is how the revolution will happen, one lonely teenager at a time.” Each time someone dares to come forward publicly with a silenced story, the culture shifts incrementally.

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Val: Your message is powerful. But what if we are socially isolated and don’t have a safe person to turn to? To confide in?

Anne: Therapy has a tremendous value here. Many of us have had painful experiences of trying to share our vulnerability with someone, and feeling judged or rejected, so we might be understandably afraid to make ourselves vulnerable again and could benefit from a therapist with whom we can practice being vulnerable. Support groups are also spaces to practice being vulnerable. If there are no support groups that you feel you can belong to, then you could start your own. For example, Alyson Thompson, a biracial woman in St. Louis was struggling with feeling left out, isolated and feeling like there was nowhere she belonged.  She created a monthly meet up group through Facebook, called “Mixed Feelings” which has attracted a large group of other biracial folks in her area.

Val: That’s a great name for her group. Facebook was an ideal way for Alyson to launch her group. But looking at social media overall, do you think it decreases social isolation or increases it?

Anne: Social media can go both ways. It can bring people together (as it did for Alyson), but it also can be isolating because comparing ourselves to others can be a source of great loneliness. Research on social media is not my area of expertise, but social media seems to perpetuate “in your face” comparing of ourselves with others which can make us feel inadequate and alone.

Val: What inspired you to start Safe Space Radio?

Anne: From a young age, I’ve always been hungry to talk about the things that weren’t named--topics that were avoided and kept secret. When I was in medical school doing my pediatric rotation, I watched children being held down while tubes were being put in them, and watching their distress really troubled me. Of course, these procedures were necessary and life-saving, and were done with the best intentions, but it still troubled me, and I wanted to find out more. I began doing research on this topic, as well as research with my own medical records from my childhood.

I made a discovery. I found out that I was hospitalized for a serious infection as a toddler of 18 months and isolated for 10 days on an infectious disease unit. My mother had just given birth to my younger sister and was not allowed to visit me for those 10 days. This was a traumatic experience for me, and I had many nightmares throughout my childhood. Yet no one ever spoke about this. Childhood medical traumas like these are often unrecognized, because the intention of the doctor is to help the child. But from the perspective of the child, the experience may feel akin to assault.

But thank goodness for my medical records, and for medical school that uncovered what had happened to me! I felt a great sense of relief that my early experiences could be named. And I felt a deep passion to humanize our patient experiences by sharing our stories. I now ask new patients about medical trauma whenever I take a trauma history, and this has brought up so many stories of suffering that the person hadn’t fully understood or recognized as being legitimate trauma. I began a research project by interviewing women with a history of childhood medical procedures, measuring the long-term psychological consequences. The surprise to me was how grateful they each were to have their struggles validated, and how eager they were to let me use their stories to try to change and humanize medical practice. The experience of living with the shame of a silenced story, then discovering the power of telling it for my own healing and the healing of others inspired me to begin Safe Space Radio.

Val: That is an amazing story, Anne. It must have been so frightening at 18 months old to be isolated in a hospital room, separated from your mother among strange people in white coats doing painful procedures. It’s so important to tell this story.

Anne: I would like to share something I learned from guests on my show about what it takes to tell our stories. I used to think my role as the host was to create a really safe space so my guests could tell their most courageous story. But over the years, I’ve learned that I had it backwards; it was their courage that creates that safety for others and for our listeners. Where there is safety, there is someone who has had the generosity to make it so through their own courage.

When I was interviewing Ebrahim Rasool of the Truth and Reconciliation Commission of South Africa, he told me a story about the role that psychiatrists can play in fostering courage. He said people who had been tortured were offered an opportunity to see a psychiatrist before they gave their testimony to the commission. The role of the psychiatrist was to foster their courage, to help them tell their story and give voice to their silenced trauma.  He called this the work of “en-couragement.”  He told me that we should always think of the word en-courage as having a hyphen. He taught me that hearing the stories of others and being taken seriously when we dare to speak foster our courage. Courage is contagious. Learning about the meaning of en-couragement transformed my work as a clinician. An important part of my role as a psychiatrist is to foster courage.

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Val: It rings so true when you say courage is contagious. We can foster courage in each other by telling our stories. That’s why Safe Space Radio is so powerful. I’m wondering what topics you will be covering this fall? Any new initiatives?

Anne: We are now in conversations with WBUR to be our distribution partner to NPR stations nationwide. We are creating a 4-part series that covers topics that are hard to talk about. The first show is called Apologies. What do we need to make our apologies truly healing? The second show is Asking for Help. We often underestimate people’s willingness to help and miss opportunities to be supported by others. Our third show is called Loneliness. How can we reduce the stigma and shame about loneliness? And finally, the fourth topic is Talking to Kids about Race and Racism. White people tend to feel awkward about this topic. How can we find useful ways to help kids understand and begin to address the disparities they see around them without reinforcing stereotypes?

Val: We could learn so much from courageous conversations about these topics. Anne, you’ve opened my eyes about what a safe space really means and about how our stories foster courage in ourselves and one another. People like you encourage us to be brave and to speak about the unspeakable things.

Thanks so much for your time today.

Anne: Thank you. I enjoyed our time.

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com