Living with a chronic illness often means becoming intimately familiar with the routine of medical appointments. These visits, intended to provide care and support, can sometimes feel like a whirlwind of discomfort and power imbalances. Yet, many of us have come to accept these experiences as part of the norm, resigning ourselves to a passive role in our healthcare.

It's time to challenge these norms.

Let's start by acknowledging the uncomfortable situations that often go unspoken, brushed aside as just another part of the medical process. For example:

The moment you step into the doctor's office and are immediately directed to the scale. For some, this simple act can trigger anxiety and body image issues. Yet, how often do we question whether being weighed is truly necessary for every appointment? Shouldn't patients have the right to consent to this procedure, rather than feeling obligated to comply?
Similarly, the rapid-fire instructions given by medical staff can leave us feeling confused and disoriented. How many times have you found yourself nodding along, only to realize moments later that you can't recall a single word that was said? This lack of clear communication can lead to missed opportunities for asking questions and understanding our care plans.
Then there's the issue of time. How often are we left feeling rushed and unheard during appointments that seem to fly by in a blur? Without knowing the duration of our allotted time, it's all too easy to suppress our concerns and prioritize the doctor's agenda over our own needs.
But perhaps one of the most unsettling experiences is the lack of consent in our medical interactions. From being touched without permission to having additional people brought into our appointments without warning, it's clear that boundaries are often overlooked in the name of efficiency.

These moments may seem insignificant on their own, but collectively they contribute to a culture of disempowerment within the medical system. As patients, we have the right to question and advocate for ourselves. We deserve to be active participants in our healthcare journey, not passive bystanders.

So, how can we reclaim our power in the medical setting?

Start by speaking up. Ask questions, express concerns, and assert your right to consent to procedures. Don't hesitate to request clarification or additional time if you need it. Remember, you are the expert on your own body, and your voice matters.
Educate yourself on your rights as a patient. Familiarize yourself with relevant laws and regulations, and don't be afraid to assert them when necessary. Seek out healthcare providers who prioritize patient-centered care and respect your autonomy.
And above all, trust your instincts. If something feels uncomfortable or wrong, don't ignore it. Your well-being is worth advocating for, every step of the way.

Together, let's challenge the norms of medical appointments for chronic illness and pave the way for a more empowered and respectful healthcare experience. Let's reclaim our voices and our agency, one appointment at a time.

Invasive Procedures Without Prior Explanation

You're suddenly subjected to a procedure without any explanation or opportunity to give consent, leaving you feeling violated and powerless.

What You Can Do: To prevent invasive procedures without explanation, assert your right to informed consent. Ask questions about any proposed procedures or treatments and ensure you fully understand the risks and benefits before proceeding. If you feel uncomfortable or uncertain, don't hesitate to voice your concerns and seek clarification from your healthcare provider. Building a trusting relationship with your provider based on open communication can help prevent misunderstandings and ensure your preferences are respected.

Dismissive Attitudes Toward Symptoms

Your concerns about new or worsening symptoms are met with dismissive responses, leaving you feeling invalidated and unheard.

What You Can Do: If you encounter dismissive attitudes towards your symptoms, advocate for yourself by expressing the severity of your concerns and the impact your symptoms have on your daily life. Provide specific details and examples to help your healthcare provider understand the urgency of addressing your symptoms. If necessary, seek a second opinion from another healthcare provider who is willing to listen to your concerns and explore potential underlying causes.

Limited Access to Medical Records

Despite being your own best advocate, you're denied access to your medical records or made to jump through hoops to obtain them, hindering your ability to actively participate in your care.

What You Can Do: Familiarize yourself with your rights under healthcare privacy laws, such as the Health Insurance Portability and Accountability Act (HIPAA). Request copies of your medical records from your healthcare provider and maintain your health records for easy reference. If you encounter barriers to accessing your records, advocate for yourself by contacting the appropriate regulatory agencies or seeking assistance from patient advocacy organizations.

Overlooking Mental Health Needs

Mental health concerns are brushed aside or treated as secondary to physical symptoms, perpetuating the stigma surrounding mental illness and neglecting crucial aspects of holistic care.

What You Can Do: If your mental health needs are overlooked or minimized, advocate for integrated care that addresses both your physical and mental health concerns. Be proactive in discussing your mental health with your healthcare provider and seek referrals to mental health professionals if needed. Educate yourself about the importance of holistic care and the impact of mental health on overall well-being. Consider seeking out healthcare providers who prioritize patient-centered care and take a comprehensive approach to treatment.

Lack of Cultural Sensitivity

Medical professionals overlook or disregard your cultural background, leading to misunderstandings, misdiagnoses, and a lack of trust in the healthcare system.

What You Can Do: To address cultural insensitivity in healthcare, communicate openly with your healthcare providers about your cultural background and preferences. Advocate for culturally competent care by expressing any specific cultural or religious considerations that are important to you. Seek out healthcare providers who demonstrate cultural humility and are willing to learn about and respect diverse cultural beliefs and practices. If you encounter discrimination or bias, consider filing a complaint with the appropriate regulatory agencies or seeking support from cultural competency training programs.

Pressure to Try Unwanted Tests or Treatments

You're pressured to try test, treatments, or medications that you're uncomfortable with or don't believe are right for you, undermining your autonomy and sense of agency in your own care.

What You Can Do: If you feel pressured to try treatments or medications that you're uncomfortable with, assert your right to make informed decisions about your care. Ask questions about alternative treatment options and express any concerns or reservations you may have. Seek out healthcare providers who prioritize shared decision-making and respect your autonomy as a patient. Consider seeking a second opinion if you feel uncertain about a proposed treatment plan and explore alternative healthcare providers who offer treatments aligned with your preferences and values.

Failure to Provide Clear Follow-up Plans

After a visit, you're left with vague instructions or no clear plan for follow-up care, leaving you feeling lost and uncertain about your next steps.

What You Can Do: To ensure clear follow-up plans are provided after appointments, advocate for yourself by actively participating in the care planning process. Ask for written instructions or summaries of your care plan to refer back to after your appointment. Clarify any uncertainties or questions you have about your follow-up care and request specific timelines for follow-up appointments or tests. If necessary, schedule a follow-up appointment with your healthcare provider to address any lingering concerns or questions and ensure continuity of care.

Insensitive Language or Remarks

Medical professionals use insensitive language or make offhand remarks that belittle your experience or condition, adding insult to injury and eroding trust in the provider-patient relationship.

What You Can Do: If you experience insensitive language or remarks from healthcare providers, address the issue directly by expressing how their words made you feel and advocating for respectful communication. Educate healthcare providers about the impact of their language and encourage them to use person-centered language that respects your dignity and autonomy as a patient. Consider providing feedback to healthcare facilities or organizations about your experiences and advocate for cultural competency training and sensitivity awareness initiatives.

Financial Barriers to Care

You're faced with financial barriers such as high out-of-pocket costs, lack of insurance coverage, or limited access to affordable treatment options, forcing you to prioritize financial concerns over your health needs.

What You Can Do: To overcome financial barriers to care, explore options for financial assistance or support programs offered by healthcare facilities, government agencies, or nonprofit organizations. Advocate for yourself by seeking transparent pricing information and discussing payment options with your healthcare provider or billing department. Consider alternative healthcare providers or treatment options that may be more affordable or covered by your insurance plan. If you encounter challenges with insurance coverage or billing disputes, seek assistance from patient advocacy organizations or legal resources to help navigate the complexities of the healthcare system.

Inadequate Accommodations for Disabilities

Medical facilities lack adequate accommodations for disabilities, making it difficult or impossible for you to access care comfortably and safely, further marginalizing individuals with disabilities in healthcare settings.

What You Can Do: If you encounter inadequate accommodations for disabilities in healthcare settings, advocate for accessibility by communicating your needs and preferences to healthcare providers and facility staff. Request accommodations such as wheelchair ramps, accessible exam tables, or sign language interpreters to ensure you can access care comfortably and safely. Educate healthcare providers and facility staff about best practices for accommodating patients with disabilities and advocate for systemic changes to improve accessibility and inclusivity in healthcare settings. Consider seeking out healthcare providers or facilities that prioritize accessibility and demonstrate a commitment to providing equitable care for all patients.

Blaming Symptoms on Stress Without Further Investigation

Medical professionals attribute every unknown symptom to stress without conducting thorough evaluations, leading to delayed diagnoses and inadequate treatment.

What You Can Do: When faced with symptoms that are attributed solely to stress, it's important to advocate for yourself and push for thorough evaluations. Request additional tests or seek a second opinion if you feel your concerns are being dismissed. Keeping a symptom journal can also help provide healthcare providers with valuable insights into your condition and potential underlying causes.

For healthcare providers reading this, it's essential to approach conversations about stress and anxiety with sensitivity, especially when patients are grappling with undiagnosed, life-altering medical conditions. Avoid framing recommendations in a way that suggests stress and anxiety are the root cause of their problems. While it's crucial to acknowledge the stress inherent in coping with daily physical symptoms, consider phrasing your response with empathy and understanding. For instance, you might say, "I understand how frustrating it must be to face ongoing symptoms without a clear diagnosis. While I can't definitively say if stress plays a role, I recognize the immense challenges you're facing. If you're open to it, I can provide referrals for mental health counseling. While it may not alleviate all your symptoms, it could offer valuable support as you navigate this journey of discovery." By showing compassion and offering practical support, you can create a more empathetic and collaborative healthcare environment for patients experiencing uncertainty and distress.

Disregarding Complementary and Alternative Medicine (CAM)

Healthcare providers dismiss or discourage the use of complementary and alternative medicine (CAM), causing patients to feel hesitant to discuss or integrate these approaches into their care.

What You Can Do: If your healthcare provider dismisses or discourages the use of complementary and alternative medicine (CAM), don't hesitate to express your interest in exploring these options. Seek out providers who are open to discussing integrative approaches and collaborate with them to develop a comprehensive treatment plan that addresses your needs and preferences. Be proactive in educating yourself about evidence-based CAM therapies and communicate openly with your healthcare team about your experiences and goals.

Not giving credit where credit is due

Despite taking proactive steps to improve my gut health and achieve remission from Crohn's disease, I repeatedly encountered medical professionals who failed to acknowledge my efforts and instead focused on the inevitability of disease recurrence. These encounters left me feeling disheartened and invalidated, as my accomplishments were dismissed and my autonomy in managing my condition was undermined.

What You Can Do: If you are facing a similar situation, seek out healthcare providers who prioritize a collaborative and empowering approach to care. Consider asking about their attitude towards patient autonomy and their willingness to acknowledge other methods to managing disease. Be open and transparent about your experiences and accomplishments in managing your condition, and seek validation and support from healthcare providers who demonstrate empathy and respect for your journey. Remember that you have the right to partner with a healthcare team that values your input and is committed to helping you achieve your health goals.

In Closing

As we navigate the complexities of our healthcare system, it's crucial to remember that healthcare providers are humans too. They operate within the constraints of institutional rules and limitations, facing immense pressure to provide quality care while often juggling heavy workloads and bureaucratic hurdles. Placing sole responsibility for our healthcare in their hands is unrealistic and unfair. Instead, we must recognize their imperfections and limitations, empowering ourselves to take an active role in our healthcare journey. By advocating for our needs, seeking out collaborative partnerships with our healthcare team, and striving for open communication, we can work towards receiving the best care possible. While our healthcare system may never be perfect, there is tremendous potential for improvement when patients and providers alike embrace empathy, understanding, and mutual respect.

To the healthcare providers reading this, I urge you to approach patient care with an open mind and a curious spirit. Small gestures of empathy and understanding can have a profound impact on the patient experience. Take the time to truly listen to your patients, asking open-ended questions that invite them to share their experiences and perspectives. Simple changes in language and approach, such as reframing questions to focus on strengths and coping mechanisms rather than deficits, can foster a deeper connection and understanding between provider and patient. Remember that each patient is unique, with their own story, challenges, and resilience. By embracing curiosity and empathy in your practice, you have the opportunity to create a more supportive and empowering healthcare environment for all.