PDF Summary:What Doesn't Kill You, by Tessa Miller

What Doesn't Kill You by Tessa Miller offers an unvarnished look into living with chronic illness. Miller draws from her personal experience with Crohn's disease to expose the physical, emotional, and relational tolls of long-term health conditions. She reveals how illnesses like Crohn's impact mental health, strain relationships with loved ones, and necessitate grieving your former self.

Miller also scrutinizes the systemic barriers facing chronically ill patients in America's healthcare system, from soaring treatment costs to inadequate insurance policies. However, the author balances these candid insights by highlighting the resilience of the chronically ill community—sharing strategies for adapting with grace, finding joy, and forging connections that foster hope.

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The author emphasizes that insurers frequently depend on patients failing to challenge their rulings, making it crucial to persist until you get the care you need. This may involve enlisting the help of your doctors, support groups, and advocacy organizations to manage the process effectively. Miller even shares her own experience with gaining approval for an out-of-state infusion during the COVID-19 pandemic, revealing the absurd hoops she had to jump through, including leveraging her social media platform to gain the attention of her health insurance provider, further emphasizing the inequities of the current system.

Context

• Health insurance policies often contain dense legal language and numerous clauses that can be difficult for the average person to understand, requiring significant time and effort to decipher.
• The process can be emotionally draining, especially for those already dealing with health issues. The stress of potentially not receiving necessary care can exacerbate existing health problems.
• Doctors and healthcare providers often have to justify the necessity of a treatment to the insurance company, which can involve providing detailed medical records and evidence of previous treatments.
• There are digital tools and apps designed to help patients manage their healthcare paperwork, track communications, and organize information needed for appeals.
• The process of self-advocacy can also have financial implications, such as lost wages from time taken off work or costs associated with seeking legal advice or additional medical opinions.
• Many chronic illnesses require strict adherence to medication schedules, which can be complicated by side effects, interactions, and the need for regular adjustments by healthcare providers.
• Seeing multiple providers can lead to inconsistent advice or treatment plans, requiring patients to act as intermediaries to ensure cohesive care.
• The uncertainty about disease progression and future health can lead to existential concerns and difficulty in planning for the future.
• Different plans offer various cost-sharing structures. Understanding these can help in choosing a plan that aligns with one's financial and health needs.
• Documenting communication can serve as evidence in disputes over coverage or billing errors, providing a clear record of what was discussed and agreed upon.
• Denials can lead to significant out-of-pocket expenses if not successfully appealed. Understanding the financial impact can motivate patients to persist in challenging denials to avoid unnecessary costs.
• Insurance companies have more resources and expertise in handling claims and appeals, which can intimidate patients and discourage them from pursuing challenges.
• Advocacy groups often work on broader policy changes that aim to improve the healthcare system, which can lead to more systemic solutions to the issues faced by individuals with chronic illnesses.
• Patients sometimes use social media to publicly address grievances with insurance companies, which can pressure insurers to respond more quickly.
• If someone with a large following shares or comments on a post, it can significantly increase the pressure on a company to address the issue promptly.
• Individuals from lower socioeconomic backgrounds may lack the resources or time to effectively challenge insurance denials, exacerbating health disparities.

Chronic Illness Financial Strain Forces Debt and Difficult Care Choices

Miller illuminates the immense financial strain involved in managing a long-term illness, particularly in the US healthcare system. Even with seemingly good health insurance, the out-of-pocket expenses for specialists, medications, procedures, and hospital stays can quickly accumulate, leaving numerous chronically ill individuals in debt. Miller shares her own experience with draining her savings to maintain medical coverage, and how the expense of her care throughout the past ten years is likely approaching one million dollars. She points to the difficult choices numerous chronically ill individuals are forced to make: rationing medications, forgoing necessary treatments, or even declaring bankruptcy, highlighting how the current system prioritizes profit over patient well-being.

Miller argues that the financial burden stemming from chronic disease is an issue inherent to the system, requiring a radical restructuring of our healthcare system to ensure all individuals, regardless of income or health status, have access to the care they need to live healthy, productive lives. She urges readers to understand these financial challenges, plan for potential expenses, and educate themselves about resources and assistance programs available.

Context

• Even with health insurance, many plans have high deductibles, copayments, and coinsurance, which can lead to substantial out-of-pocket expenses for patients.
• Necessary medical equipment or supplies, like mobility aids or diabetic testing supplies, may not be fully covered by insurance, adding to out-of-pocket expenses.
• Changes in insurance policies, such as increased premiums or reduced coverage, can occur, forcing individuals to adjust their budgets and potentially use savings to maintain coverage.
• Unexpected hospitalizations or emergency care can lead to large, unplanned expenses, contributing to the overall financial burden.
• While there are assistance programs available, they can be difficult to navigate and may not cover all necessary treatments or medications, leaving gaps in care.
• Drug prices in the U.S. are among the highest in the world, partly due to the lack of price regulation, allowing pharmaceutical companies to set prices based on market demand rather than patient need.
• The system often emphasizes treatment over prevention, which can lead to higher long-term costs for managing chronic diseases that might have been mitigated with earlier intervention.
• Significant changes would require new policies and legislation, potentially involving contentious political debates and negotiations.
• In systems where insurance is tied to employment, losing a job can mean losing access to affordable healthcare. This can disproportionately affect those with chronic illnesses who may be unable to work consistently.
• Joining support groups or online communities can provide valuable information and shared experiences about managing costs and accessing resources, offering both practical advice and emotional support.

How Persistent Health Issues Affect Relationships

This section focuses on how long-term health conditions impact relationships with friends, family, and significant others, highlighting the need for open communication, empathy, and adaptation. Miller explains how social withdrawal, perceived unreliability, and misunderstandings about chronic illness can put a strain on these connections. She encourages healthy individuals to educate themselves about their loved ones' illnesses, offer specific support, and resist the urge to give unsolicited advice.

Chronic Illness Strains Family, Friend, and Partner Relationships, Requiring Adaptation

Miller shares her personal experiences with the changing dynamics in her relationships, revealing how her illness challenged her capacity to support and be there for those closest to her. She highlights the complexities of these relationships, with loved ones feeling burdened, confused, or guilty, while those suffering might feel misunderstood, isolated, and even resentful toward those who aren’t ill.

Chronic Illness May Lead to Social Withdrawal and Perceived Unreliability, Causing Isolation

Miller candidly explores how her chronic condition led to periods of social isolation as she struggled to explain her situation and cope with the emotional weight of her diagnosis. She describes canceling plans, withdrawing from social gatherings, and feeling ashamed of her illness, leading to feelings of loneliness and guilt for not being a good friend, sister, daughter, or partner. The author encourages chronically ill individuals to communicate openly with their loved ones about their experiences, and to acknowledge that even when physical symptoms improve, the mental health effects of chronic illness may persist, requiring ongoing support and understanding.

Additionally, Miller discusses "The Spoon Theory" by Christine Miserandino, introducing the concept of limited energy reserves for individuals with chronic illness. She highlights how even minor activities can drain those reserves, leading to exhaustion and the need for rest, which might require canceling plans or refusing invitations.

Other Perspectives

• Social isolation is a complex issue that can be influenced by a variety of factors beyond chronic illness, such as personality traits, pre-existing mental health conditions, or socioeconomic status, which may also play significant roles in an individual's social engagement.
• In some cases, individuals may choose solitude as a form of self-care or to manage their energy levels, rather than experiencing it as a direct result of shame and guilt.
• Some individuals may not feel comfortable sharing their experiences due to privacy concerns or fear of being a burden, which can make open communication more challenging.
• "The Spoon Theory" is a metaphor that may not resonate with everyone, as individuals experience and conceptualize their energy and limitations in different ways.
• The degree to which minor activities affect energy reserves can vary greatly among individuals with chronic illness, and some may have developed coping strategies or treatments that mitigate these effects.
• Technology can offer alternatives to physical presence at social gatherings, such as video calls or group chats, allowing individuals to participate without the same level of energy expenditure.

Loved Ones May Struggle to Understand Chronic Conditions, Help, or Manage Emotions, Causing Tension and Misunderstandings

Miller acknowledges the challenges faced by the loved ones of chronically ill people, who may struggle with understanding the nature of chronic illnesses, offering the right kind of support, and managing their own emotions. She recounts receiving unsolicited advice, remarks on her diet, inquiries about having children, and being labeled "inspirational," revealing how these well-intentioned gestures can feel dismissive and ultimately damaging.

Miller shares how these misunderstandings can create tension and result in hurt feelings on both sides, straining relationships that were once healthy and supportive. She encourages healthy individuals to educate themselves about their loved one's illness, learn how to offer specific and welcome assistance, and be mindful of their language and assumptions regarding chronic illness. Miller advocates for open communication, explaining how honest dialogue can help bridge the gap between those who are ill and those who aren't, fostering greater empathy and understanding.

Context

• Many chronic illnesses are not well understood by the general public, leading to a lack of awareness about appropriate ways to support those affected. This can result in reliance on stereotypes or misinformation.
• While intended as a compliment, calling someone with a chronic illness "inspirational" can feel patronizing. It may reduce their complex experiences to a simplistic narrative of bravery, ignoring the daily struggles they face.
• Chronic illnesses often require ongoing adjustments in daily life, which can lead to emotional fatigue for both the person with the illness and their loved ones. This fatigue can make it difficult to maintain patience and understanding, leading to increased tension.
• Specific assistance might include helping with daily tasks, attending medical appointments, or simply being present to listen. It's important to ask the person what kind of help they need rather than assuming.
• Empathy requires understanding the emotional experiences of others, which can be enhanced through open dialogue, allowing healthy individuals to better grasp the daily challenges faced by those with chronic conditions.

Romantic Challenges: Intimacy Changes, Future Fears, Caregiving Burdens Test Partnership Strength

Miller explores the unique challenges faced by romantic partners when chronic illness enters the relationship, drawing from her own experience with an abusive partner who later became her fecal transplant donor. She highlights how the dynamics of intimacy and sexuality can shift, raising difficult discussions about changing physical limitations, fears surrounding the progression of the condition, and the potential burden of one partner becoming a caregiver.

Miller also discusses the pressures faced by those with chronic illnesses to appear "normal" and minimize their condition to appease their partner, while healthy partners might struggle to understand the disease's unseen impact, leading to resentment and frustration. She encourages couples to address these complex challenges through open communication and couples therapy, fostering a shared understanding of the illness's impact and developing strategies for adapting and maintaining a healthy, fulfilling relationship.

Context

• The dynamics of the relationship may shift, with one partner potentially taking on more responsibilities, which can lead to feelings of imbalance or resentment.
• Changes in appearance or bodily function due to illness can affect self-esteem and body image, influencing how comfortable a person feels in intimate situations.
• Physical limitations can affect sexual activity, requiring couples to explore new ways to maintain intimacy and address any discomfort or changes in sexual function.
• Fear of the unknown can make it difficult for partners to communicate openly about their worries, leading to misunderstandings and emotional distance.
• The caregiving partner may struggle with a loss of personal identity and independence, as their role becomes more focused on providing care rather than pursuing individual interests and goals.
• Cultural narratives often glorify overcoming adversity without showing vulnerability, which can discourage individuals from expressing their struggles openly.
• The need for lifestyle changes, such as dietary restrictions or altered daily routines, might not be immediately obvious to partners, requiring ongoing communication and adjustment.
• Medical expenses and potential loss of income due to illness can create financial stress, adding another layer of pressure on the relationship.
• Open communication enables couples to collaboratively address practical issues, such as managing medical appointments or adjusting household responsibilities.
• Therapy can help couples develop coping strategies to manage stress and emotional strain, which can improve relationship satisfaction and resilience.
• Establishing clear boundaries can help manage expectations and ensure that both partners feel respected and valued.

Resilience and Joy While Managing a Long-Term Illness During the Pandemic

This section focuses on how Miller learned to find meaning and joy in her life, despite the physical and emotional challenges of chronic illness, especially during the COVID-19 pandemic. She highlights the importance of embracing self-compassion, reframing your mindset, and finding strength in relationships. Miller demonstrates how practicing gratitude, focusing on small joys, and utilizing coping mechanisms can foster resilience and empower chronically ill individuals to lead fulfilling lives.

Chronic Illness: Discovering Unexpected Meaning, Growth, and Happiness

In this section, Miller reflects on her personal journey with ongoing health challenges, highlighting the unexpected ways it has led to growth, meaning, and even joy. She embraces vulnerability, sharing her struggles with anxiety and fear, and how therapy helped her understand the root of these emotions, allowing her to develop healthy coping mechanisms. The author encourages readers to redefine their expectations of what constitutes a "good" or "successful" life, releasing the desire to control things and embracing the present moment.

Learning to Release: Embracing Self-Compassion, Reframing Mindset, and Experiencing Joy

Miller emphasizes the importance of releasing perfectionism and embracing self-compassion, a crucial step in fostering resilience when coping with long-term health conditions. She describes her past struggle with self-criticism and the need to be perceived as flawless, highlighting how these internal pressures compounded the challenges of her diagnosis.

Miller advocates for a mindset shift, replacing self-blame with self-acceptance and acknowledging the power of small, daily joys. She challenges the societal notion that productivity and achievement are the sole markers of worth, recognizing the importance of rest, self-care, and mindfulness in managing long-term health conditions. The author encourages readers to celebrate their little wins, cultivate gratitude for what their bodies are capable of, and find peace in being present.

Context

• Persistent self-criticism can lead to feelings of inadequacy and depression, which may hinder one's ability to manage a chronic illness effectively.
• The need to appear flawless may cause individuals to withdraw from social interactions, fearing judgment or pity, which can lead to loneliness and a lack of support.
• Engaging with supportive communities or therapy can provide external validation and encouragement, aiding the transition from self-blame to self-acceptance.
• Experiencing joy can have positive effects on physical health, such as boosting the immune system and lowering blood pressure, contributing to overall well-being.
• Capitalist economies often reward high productivity, which can create pressure to constantly perform, sometimes at the expense of personal and communal well-being.
• Recognizing minor successes can create a positive feedback loop, encouraging continued effort and progress, even when larger goals seem daunting.
• Expressing gratitude can strengthen social bonds and support networks, which are vital for emotional support and practical assistance when dealing with health issues.
• Cultivating present-moment awareness can build resilience by helping individuals adapt to challenges with a clearer, more focused mindset, reducing overwhelm.

Bonding With Others in Support Groups and Online Communities Fosters Resilience and Belonging

Miller underscores the vital role of online communities and peer support groups in fostering resilience, providing a sense of belonging, and combating the isolation often associated with ongoing medical conditions. She credits these communities with offering her a supportive environment to share her experiences, ask for advice, learn about new resources, and find meaningful connections with people who "get it" in a manner that others can't.

The author discusses her fears surrounding joining these groups, worried about being labeled "that sick girl" or sharing personal information about her illness with strangers. However, she discovered that these fears were unfounded, revealing how she encountered compassion, understanding, and support. Miller encourages readers to explore these communities, either virtually or face-to-face, acknowledging that finding connection with those facing similar challenges can be immensely comforting and empowering.

Practical Tips

• Create a peer recognition system to celebrate contributions within the community. This could be as simple as a weekly shout-out on social media to members who have offered valuable advice or resources, or a more formal monthly award with a small prize, like a gift card or a feature in a community newsletter. Recognizing members not only motivates them but also strengthens the bonds within the community.
• Start by attending a support group as an observer to ease into the environment without the pressure of sharing. By simply being present, you can acclimate to the group's dynamics and observe the compassion and support offered, which may alleviate your initial fears about participation.
• Develop a 'challenge of the month' within your support group to encourage active participation and growth. Each month, the group could focus on a specific challenge related to their common issues, with members sharing their experiences and strategies for overcoming that challenge. This not only promotes engagement but also provides a structured way for members to tackle their problems together.

Covid-19 Worsens Chronic Illness, Yet the Author Adapts, Advocates for Her Health, and Finds the Bright Side in Difficulty

Miller chronicles the impact of the COVID-19 pandemic on her life with chronic illness, highlighting the increased health risks, the exacerbating stress triggers, and the additional barriers to care. She reveals the anxieties surrounding potential hospitalizations, the concern that her medication may be ineffective, and the maddening process of obtaining a pre-authorization for an out-of-state infusion. Despite these immense challenges, Miller demonstrates her resilience, showcasing her adaptability, advocacy skills, and commitment to experiencing joy in difficult times.

She shares how the pandemic compelled her to re-evaluate her priorities, ultimately choosing to relocate to a safer environment and prioritize her health over work. Miller also highlights the bright spots in this challenging time, finding comfort in connecting with her close ones, seeking solace in nature, and persisting in sharing her story with the world. The author acknowledges that certain days will be harder than others, but emphasizes the importance of believing in better days and staying hopeful.

Context

• The pandemic accelerated the adoption of telehealth services, which became a crucial tool for chronic illness patients to access medical care while minimizing exposure to the virus.
• People with chronic illnesses often have compromised immune systems, making them more susceptible to infections like COVID-19, which can lead to severe complications.
• The pandemic heightened stress and anxiety levels, which can exacerbate chronic conditions. Access to mental health services was also limited, further impacting overall health management.
• Travel restrictions and overwhelmed healthcare facilities made it difficult for patients to access necessary treatments, such as infusions or specialist consultations, especially if these were located out of state.
• Delays in obtaining pre-authorization can lead to interruptions in treatment, potentially worsening the patient's condition or causing additional stress and anxiety.
• Adapting daily life could involve modifying living spaces for comfort, creating new routines that accommodate health needs, and finding new ways to engage in hobbies or work from home.
• Relocating can improve access to specialized healthcare providers or facilities that are better equipped to manage specific chronic conditions.
• Engaging with nature can provide a sense of peace and a break from the constant focus on illness. Activities like walking in a park or sitting by a body of water can offer a mental escape and promote relaxation.
• Personal narratives like Miller's can provide comfort and solidarity to others experiencing similar struggles, fostering a sense of community.
• Hope serves as a coping mechanism, providing motivation and a sense of purpose during challenging times. It can help individuals set goals and work towards them despite obstacles.