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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