In 2017, I hit rock bottom in my health when I was diagnosed with a neurologic disorder, idiopathic hypersomnia. It was a time when I felt crushed under the weight of limitation, and my future was weighed down by doubt and perceived impossibilities.
I was diagnosed with a chronic neurologic disorder with excessive fatigue in 2017. For the five preceding years, I had struggled with insomnia and gradually progressing health issues. During challenging periods, I have always lived by the mantra that “when the going gets tough, the tough get going.” I loved my job, and I loved my children. I powered through following doctors’ advice for sleep and working on my nutrition and exercise. I always believed that a shift in my health was just around the corner and things would get easier soon.
But that thought process proved to be unsustainable in the long term. When the fatigue was too severe to ignore, I started taking the recommended prescription drugs for my condition. My health took a steep decline, and I experienced a whole range of new symptoms, including joint and muscle pain, heart palpitations, brain fog and anxiety that now interfered with my ability to cope with day-to-day demands. I was then referred to several other specialists. Initially, I had been optimistic about returning to health, but I was now very worried about my health and the future of my children.
When my doctor told me in no uncertain terms that there was no way to treat the root cause and that we would have to work on fine-tuning my prescription drugs and managing symptoms, I felt like I had just hit a brick wall going 100 mph. A future managing symptoms that were having such a severe impact on my day-to-day was not even imaginable. I felt lost and didn’t know where to turn for alternative support. If there was one thing I knew then, I could not settle here for the sake of myself or my children.
There were many lessons in navigating what was, at first, a very complicated process. Here are the top 5 takeaways that helped me during this uncharted territory in my health journey:
1. Take control of your health narrative – Treat your doctor as a trusted partner not the absolute judge over your health. Don’t settle for the status quo in your health by surrendering to medical determinism or passive health compliance. Handing over control of our health crushes us under perceived limitations and holds us down in doubt and impossibility. Permit yourself to perceive new possibilities and dreams. Challenge the possibilities through education, exploration, support systems and advocating for yourself. No one has the final say about your future health except you. At the very least, you owe it to yourself to get second or third opinions. Personal strengths you can tap into here are hope and courage to change.
2. Ditch a fixed mindset – One of the beliefs I had to get past was my orientation towards Western medicine as the ultimate source and authority of my health. I certainly believe Western medicine has a primary role to play in acute care, chronic illness, and preventative health. However, I mistakenly believed that any approach outside mainstream medicine was pseudoscience. Keep an open mind and explore options. Learn everything you can about holistic approaches to medicine rooted in science and lifestyle in tandem with your doctor’s treatment plan. Personal strengths you can tap into here are curiosity and perspective to see a bigger picture.
3. Question the status quo – Don’t discount anything immediately. Approach information skeptically, but with extensive research over time, you will notice patterns and be able to corroborate treatment approaches through multiple reputable sources and the latest scientific research. The treatment I was most skeptical of was eventually the one I tested and used. This is where my background in accounting and audit came in handy where we use the concept of professional skepticism in evaluating evidence. Professional skepticism is a fundamental concept in accounting and auditing. It’s the mindset auditors adopt to question and critically assess the validity of information and evidence before arriving at a conclusion. It means not taking information at face value, constantly asking for evidence, and having a mindset that remains open to the possibility that the information could be misleading or incomplete. Professional skepticism isn’t about being cynical or dismissive; it’s about being open to new information while requiring sufficient and appropriate evidence before accepting a claim. This approach allows you to remain open to new and potentially beneficial health interventions while safeguarding against misinformation.
4. Knowledge is power – Seek as many diverse perspectives and viewpoints as possible to challenge your assumptions and evaluate possible solutions or course of actions. Don’t let fears hold you back. Our journey of learning is ongoing, and by embracing the right tools and fostering a commitment to learning, we all have the potential to sharpen our critical evaluation skills, enabling us to navigate information with discernment and insight. Make a significant effort to review evidence-based treatment strategies that work for others from reputable sources, the latest scientific research in medical journals, and health-specific search engines like PubMed for reliable information: https://pubmed.ncbi.nlm.nih.gov/. Explore the pros and trade-offs, the risks and benefits, and the potential of each option. Personal strengths you can tap into here are curiosity, judgement and humility that lead to a more balanced and comprehensive approach to evaluating research, ensuring that decisions and conclusions are well-informed and consider a broad spectrum of information.
Stay tuned for my upcoming Blog: Digital Health Detective: Navigating the Maze of Online Fact and Fiction in Health Information.
5. There is no gold standard for treating chronic illness, and the symptoms matter more than the diagnosis. Healing is very bio-individual, and generic approaches don’t work. What works for one person may not necessarily work for you. You manage your health 99% of the time between doctor appointments. Look for health practitioners who custom-tailored treatments, who listen, empower you, and teach you how to manage your health and adjust your approach between appointments.
I also found that listening to your body and treating symptoms was more important than the diagnosis. Even though many medical diagnoses have fatigue and other symptoms in common, the symptoms often have standard solutions that can be tailored to your unique condition. In my experience, you can tell whether a treatment protocol works relatively quickly, fueling your motivation to continue over the long term.
If you feel stuck in your health, please reconsider the status quo. What recent scientific studies or doctor consultations should you be exploring further? A diagnosis does not have to be your destiny. But it can be a starting point for transformation and intentional action toward better health and a life you truly love. I know this world is possible because I’ve lived it.
As we conclude, here’s a peek into something that fuels my soul: music. The title of this blog post pays homage to Tom Petty’s ‘I Won’t Back Down’ from his album Full Moon Fever, which inspired my journey and this Blog’s message of resilience. For more on overcoming fatigue and enhancing health—themes that resonate with this determination—explore my resources page or connect with me on Instagram (lovethelifeyoulive.ig) for more insights.
Important Information: The information provided in this blog is for informational purposes only and is not intended as a substitute for professional medical or mental health advice, diagnosis, or treatment. While health coaching can support and enhance overall wellness, it is not a substitute for professional medical or mental health care. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition or health objectives.
About the Author
Heather Budd is a National Board Certified Health and Wellness Coach, trained by the Functional Medicine Coaching Academy. She specializes in guiding individuals through lifestyle transformations to manage chronic illness and combat fatigue. With a diverse background in business, leadership and a profound personal health journey, Heather empowers clients to reclaim their health and extend their health span.