Echoes of Pain: Chronic Advocacy

Living with a chronic illness is a challenging and often frustrating experience. As someone who lives with fibromyalgia, arthritis, and Chiari malformation, I understand all too well the complexities involved in accessing and managing medical appointments and treatments. Here, we will explore the impact of chronic illness on mental health, discuss medical gaslighting, and look at practical strategies for self-advocacy in the healthcare system.

“In the echoes of pain lie the seeds of healing.”

Gabor Maté, When the Body Says No

The Impact on Mental Health

Chronic illness affects more than just physical health. The ongoing process of managing symptoms and dealing with the healthcare system can severely impact mental well-being. Feelings of helplessness, frustration, and anxiety are common and can make daily life even more difficult. The process of accessing care can also lead to these mental health symptoms due to feeling unheard, dismissed, and gaslit when you know something is wrong. This can lead to increased anxiety and depression as you struggle to maintain the life you once led.

The lack of adequate support and services for chronic conditions can increase feelings of isolation and despair. Struggling to find effective treatments and understanding from medical professionals can lead to higher levels of depression and health anxiety.

Chronically ill patients often report that their concerns are dismissed as mental health issues rather than physical causes, without thorough testing to identify underlying problems, only to receive a diagnosis later after much pushing to get the tests. This creates a vicious cycle, where mental health issues are exacerbated by the lack of proper medical investigation and care, leading to mistrust in the healthcare system. It is important to acknowledge these emotions and understand that they are a natural response to the challenges faced.

Medical Gaslighting

Medical gaslighting occurs when healthcare providers dismiss or trivialise symptoms, attributing them to psychological factors rather than recognising their physical origins. This can lead to delayed diagnoses, inadequate treatment, and a sense of invalidation.

Many people face scepticism and disbelief from medical professionals, who may attribute their symptoms to anxiety or hypochondria. This dismissive attitude can prolong suffering and erode trust in the healthcare system, leaving patients feeling abandoned and marginalised.

Have you heard of Compassion Fatigue?

Compassion fatigue, a type of emotional and physical exhaustion, significantly impacts healthcare workers, particularly doctors. This condition often goes unnoticed and stems from the constant stress of dealing with distressed patients without adequate support or resources.

The pressures within healthcare systems, such as long waiting lists and limited resources, make it difficult for doctors to empathise with patients. Healthcare professionals are forced to make tough decisions about who receives immediate care and who must wait, adding to their stress and leading to burnout.

Many doctors enter the profession with the desire to help but find themselves constrained by a system that, by accidental design, ensures they are overwhelmed and burnt out. This leaves them feeling powerless to adequately help and support their patients. As a result, patients often feel like a nuisance or dismissed, especially when their complex needs require coordinated care from various medical fields, including pain management, diagnostics, care planning, and psychological support.

Addressing and understanding behaviours like dismissal or gaslighting is essential for improving patient care and ensuring respect and thorough attention in healthcare settings. However, patients often have to advocate for themselves, particularly when biases are involved.

Bias

Biases, which are tendencies to think in certain ways that affect decisions and judgments, can complicate diagnoses and treatment. These biases can be related to gender, race, or sexual orientation, affecting women, people of colour, and queer patients.

Until healthcare systems fully address these biases, patients need to be informed and empowered to become their own advocates. Knowledge about potential biases can help patients navigate their healthcare experiences more effectively, ensuring their needs are met.

This unfortunate necessity underscores the urgent need for systemic reform to create healthcare systems that provide comprehensive and compassionate care, thereby reducing the burden on both patients and healthcare providers.

Empowering Yourself

Given all this information, it becomes crucial to cultivate a sense of empowerment and agency in managing chronic illness, especially for individuals seeking a diagnosis but suspecting an underlying issue. In the face of systemic challenges and biases within healthcare systems, patients must take an active role in advocating for their own well-being.

When grappling with undiagnosed symptoms, it is easy to feel frustrated and disheartened by the lack of answers. However, this is precisely the time when empowerment is most essential, even though I know it is incredibly difficult to be so proactive in your treatment and when actively seeking a diagnosis and treatment when you are already feeling exhausted and sick.

By arming yourself with knowledge about your symptoms and potential conditions, you can approach healthcare professionals with informed questions and concerns, advocating for thorough investigations and considering alternative explanations to ensure no stone is left unturned in the pursuit of a diagnosis.

Empowerment also involves nurturing a holistic approach to wellness, incorporating self-care practices that promote physical, emotional, and mental health. This may include mindfulness techniques, yoga stretches, reiki or any stress management strategies while building a strong support network of friends, family, and community resources.

By taking ownership of your health journey, you can navigate the challenges of chronic illness with resilience and determination. Armed with knowledge and a proactive approach, you can confidently engage with healthcare providers, ensuring you receive the attention and treatment they truly need. Empowerment becomes a beacon of hope amidst the complexities of the healthcare landscape, offering a pathway towards greater autonomy, well-being, and quality of life.

Here are some practical strategies for self-advocacy

Document Everything: Keep detailed records of your symptoms, treatments, and any interactions with healthcare providers. Include information such as the impact of symptoms on daily life, financial burdens, and emotional struggles. This documentation can support your case when advocating for testing and appropriate care.

Ask Questions for Clarity: Seek clarification from your healthcare provider if you are unsure about your diagnosis, treatment options, or next steps. Ask for explanations in plain language and request additional information or resources to better understand your condition.

Seek Second Opinions: If your current healthcare provider dismisses or overlooks your concerns, seek a second opinion from another medical professional. Explore alternative perspectives and treatment options.

Bring Support: Bring a trusted friend or family member to your medical appointments for emotional support, witness, and advocacy. Having someone with you can help ensure that your concerns are taken seriously and that you can communicate effectively with your healthcare team. If you feel unable to advocate for yourself, perhaps ask a friend to read this article, have them sit with you and tell them what you would like to happen at an appointment, such as questions answered to tests, so they can advocate for you when you’re having a bad day.

Ensure Documentation in Medical Records: If your healthcare provider refuses further testing or treatment options, request that this refusal be documented in your medical records along with the reason for their decision. This documentation can be important if you choose to seek a second opinion or pursue alternative care.

Request Detailed Explanations: Request detailed explanations for any recommended treatments, medications, or referrals. Ask your healthcare provider to explain the rationale behind their recommendations and explore alternative options if your concerns are not addressed. Ask for it to be put in writing to help you process the information or to be able to show others for feedback.

Be compassionate with yourself.

It is important to recognise the difficulty of advocating for yourself while dealing with the daily challenges of chronic illness. Fatigue, brain fog, and the struggle to understand your symptoms can make self-advocacy feel overwhelming. Be compassionate with yourself and understand that advocating for your needs is an important act of self-care.

Managing chronic illness requires resilience, perseverance, and self-advocacy. By validating your experiences, challenging medical gaslighting, and using practical strategies for empowerment, you can demand the respect and care you deserve. Remember, you are not alone, and together, we can navigate the healthcare system with strength, courage, and compassion.

Please reach out for support should you need it. I offer one-to-one sessions, and I also run a monthly online support group starting June 4th, 2024, tailored for individuals living with chronic illness or pain. This group provides a safe and understanding environment where you can share your experiences, learn coping mechanisms, and receive therapeutic guidance from a qualified psychotherapist. Sessions are held on the first Tuesday of every month at 7.30 PM and are limited to 12 participants. Register now through email at info@clodaghmcgrath.com to secure your spot, as spaces are limited.

Wishing you all the best on your self-advocacy journey,
Take care,
Clodagh