Lauren Ziaks
I Thought my Mystery Illness would be the end of me. Now I Live a Life I Love, and You Can, Too.
Ten years ago, I was in my 20s and it felt like my life was slipping away.
I realized that something was wrong in 2014 when I experienced my 9th concussion and I wasn’t recovering the way I had in the past. Despite following the usual medical advice, I was still so symptomatic and my quality of life was only getting worse.
As a healthcare provider, I was aware of the statistics at the time. I knew the risk of neurodegenerative diseases following repetitive head injuries. I was coming to terms with the fact that I would die prematurely due to my brain injuries. That may sound hyperbolic, but it was my reality.
Despite being a lifelong athlete, daily activity felt insurmountable. I couldn’t stand or walk without feeling sick or faint. My favorite activities like running, hiking, or skiing felt daunting in ways they never had. Just prior to my triggering event, I had run my first marathon (4 hours and 11 minutes!). Clearly, something was very wrong, but all the medical tests kept coming back “normal.”
I began to focus almost exclusively on my work because it was a place I could feel productive when so much of normal life was inaccessible.
As a Physical Therapist, I was working with professional athletes and other patients on a daily basis, but my own health only seemed to be declining. I had already pivoted out of sports PT to outpatient practice, partly due to symptoms.
THE TURNING POINT
After a long journey through the medical system with limited answers, I met an Occupational Therapist who was able to identify my vision impairments and start me on a regimen to tolerate reading (and paperwork) again. This relationship turned into a mentorship and eventually a career change. Vision and vestibular therapy gave me back a significant portion of my life – the ability to work. Although my symptoms and exercise intolerance persisted, I was able to see steady improvement over time and found a new purpose in life as a concussion therapist.
I began to work primarily with patients experiencing chronic conditions related to concussion, dysautonomia, and eventually long-Covid. By observing my patients and throwing myself into my own clinical research and self-advocacy, I eventually received two crucial diagnoses that changed the trajectory of my recovery: POTS (Postural Orthostatic Tachycardia Syndrome) and FND (Functional Neurological Disorder).
POTS is a chronic autonomic nervous system disorder causing an abnormal increase in heart rate (≥30 bpm for adults) upon standing, leading to symptoms like dizziness, lightheadedness, fatigue, brain fog, palpitations, and fainting. POTS is easy to diagnose with the right testing, but lack of awareness about the disease means that in reality, patients wait an average of four years and see seven physicians before receiving a diagnosis.
Understanding my diagnoses, finally gave me a way forward and life began to open up again. However, at every step of the way, I was discredited by providers, even as I built a name for myself in the concussion space. If they could treat me this way, I worried about the experiences of everyone else?
Navigating the healthcare system as both a patient and provider gave me a bleak glimpse into the reality for so many people with the same symptoms and diagnoses as myself. Although I’m proud of how far we’ve come and how much we’ve learned, back in 2014, none of us were getting the level of care we needed or deserved.
The stories I heard from patients combined with what I knew from my own experience became my driver to find a way to ensure that no one else would have to walk the same path that I did.
CREATING A NEW PARADIGM
As a clinician and researcher, I had the opportunity to collaborate with the best providers in the autonomic space. After developing my integrative concussion physical therapy protocol, I co-developed a novel exercise protocol for patients with dysautonomia. It wasn’t a straight path to recovery, but I finally noticed my symptoms improving and I’ve been able to help hundreds of patients accelerate their own recovery using the very same methods.
I now have a full life. I have symptoms. I have to make hard choices that I would never have had to consider in the past. But, I work. I’m going to school for my PhD. I am living my dream of researching for answers to these complex conditions. I get to lecture nationally and spread awareness. I got to have one kiddo, which I never thought would be an option for me given the severity of my chronic, debilitating fatigue (ME/CFS). I get to spread (realistic) hope to so many.
I must acknowledge my privilege. My education, credentials, financial, and home support allowed me to develop my research, take risks professionally, and lean on my partner for support in day-to-day tasks when my symptoms were overwhelming.
My goal is to connect with patients, their family members, and care providers at every level to share my knowledge and break down the research into manageable bites. There is currently a 17-year gap between new research being published and it being implemented in clinical practice. My mission is to close the knowledge gap and accelerate the availability of care to patients just like me.
