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Introduction: The Unseen Challenge
There's nothing more frightening than waking up one day and realising your body no longer responds as expected. The simple walking, talking, and connecting with others suddenly become elusive. It's as if life has transformed into an insurmountable mountain, and you find yourself without the necessary tools and knowledge to navigate its steep, slippery slopes.
The Lonely Climb
As you start climbing that mountain, the circle of support narrows, and seeking help from professionals can be a trial and error experience. The journey becomes a delicate dance between progress and setbacks, leaving you in a blur of uncertainty.
Stumbling Upon Golden Nuggets
Somewhere along the line, you stumble upon a treasure – a golden nugget found in books about health and healing, and written by renowned authors, physicians, and specialists. They challenge the current beliefs of science, expanding views and providing a lifeline for those grappling with functional neurological disorder (FND). The newfound knowledge equips you to step onto that mountain slope, one cautious step at a time.
Feeling Your Way Through
The unfamiliar terrain requires careful consideration. Is it a hard stone ground or one with lots of loose stones? Each step must be weighed to achieve the best outcomes, and just in case, to brace for any impact. This mountain is known as FND, and many of us are still navigating its high, slippery slopes and steep ridges. The difference now lies in our familiarity with the territory and improved strategies for the journey.
Dissatisfaction and Shame
I was reminded of my humble beginnings, after a chance encounter with a past psychiatrist. It triggered memories of our initial interview meeting, seven years and ten months ago. For a moment I thought she would gladly hear me out, hoping that the progress I've made would be acknowledged. However, I was sorely mistaken. Disappointment filled my whole being.
This response is a stark reminder of the lack of understanding about FND at the time, and how that's still a problem today. The explanation provided then was insufficient, leading to a gut-wrenching disappointment, a deflated sense of self, toxic shame and a constant struggle between mind and body.
The Journey of Understanding
To bridge the communication gap between patient and doctor, the importance of visual explanations becomes evident. Seeking insights, the question was posed to 'ChatGPT', unveiling current beliefs in visual learning.
Snippets of Insight
The response highlights the need for:
Patient-centered communication using clear language,
The role of visuals in complementing verbal explanations, and
The use of technology for immersive medical insights.
Yet, personal experiences reveal a consistent shortfall in
fully grasping medical explanations!
Lessons Learned and Shared
Four key lessons emerge, offering a roadmap of understanding and healing for both FND patients and healthcare professionals.
1. Connecting with the Body
Explaining the body and nervous system in a healthy state becomes a vital initial step. This connection aids in 'coming back to your body' after each FND episode. Here, we draw inspiration from Dr. Peter Levine's tapping exercises for trauma release.
2. Embracing Diverse Therapies
Recognition of different therapy options beyond medication and talk therapy, becomes imperative. EMDR (Eye Movement Desensitization and Reprocessing) is spotlighted for its profound impact on trauma processing, offering a lifeline to those navigating the complexities and interconnectedness of trauma and FND.
3. Respiratory System and Holistic Well-being
Understanding the significance of the respiratory system in relation to overall body function becomes pivotal. Breath, in its essence, intertwines with metabolic, cardiovascular, and muscular systems, providing a foundation for improvement.
4. Empowerment and Mindful Relationships
Patients empowered with knowledge and offered diverse therapies are more likely to build better relationships with themselves and those around them. The principles of acceptance, compassion, and non-judgment, akin to the nine attitudes of mindfulness, form the basis of these connections.
Conclusion: A Paradigm Shift
The journey through FND prompts a paradigm shift in perceiving illness. I want to conclude this post with a short snippet from the book: 'the Myth of Normal' by the bestselling author and specialist, Dr. Gabor Maté and co-author, Daniel Maté, his son.
'If we could begin to see much illness itself not as a cruel twist of fate or some nefarious mystery but rather as an expected and therefore normal consequence of abnormal, unnatural circumstances, it would have revolutionary implications for how we approach everything health related.'
Our mountainous journey of FND is one marked by challenges, resilience, and transformative insights.
As we continue to climb, the hope is for greater understanding, compassion, and support within our community.
Other Helpful Resources:
The Nervous System After Trauma - NICABM
Letting Go is a Doorway to Freedom: 9 Attitudes of Mindfulness and Meditation - Jon Kabat-Zinn
The Myth of Normal - Gabor and Daniel Maté
The Nervous System, Part 1: Crash Course Anatomy & Physiology #8 - CrashCourse
Follow the rest of The Nervous System Series under the Anatomy and Physiology Playlist - CrashCourse
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