Mathias is a patient who has been working with Dr. Kharrazian to manage his sports-related brain injury and related chronic health conditions. He has shared this as an open letter to all practitioners. It is posted here with his permission.
This is a follow-up to my case history. It has been an intense struggle to find balance, and I haven’t wanted to post until I felt confident it could be helpful. Or at the very least, honest in reflection.
What I really want to share is something you might learn, as a practitioner, about the difficult process of navigating a somewhat advanced (or guarded) neurological condition from the perspective of a patient. Hopefully this might help you avoid uncomfortable situations or emotionally draining and debilitating patient-doctor relationships.
“My case is advanced and complicated, and my mental state often reflects that.”
Please see Dr. Kharrazian’s wonderful video “How Not To Burn Out In Practice,” [in the Kharrazian Institute Autoimmune course] which discusses finding the right personal boundaries and helpful strategies to avoid burning out emotionally. I’ve seen many doctors and healers become patients.
For me personally, it has been hard to communicate and advocate for personal recovery while maintaining healthy patient-doctor relationships within more non-conventional models. Because functional medicine tends to allocate more time with a patient and carries an intrinsic amount of personalization, the relationships often go deeper than the standard 10-minute checkup in allopathic medicine.
Because our culture is so fearful of death, and being sick is largely seen as taboo, it makes communication extremely difficult within these doctor-patient relationships. Even if I were completely healthy, no one has taught me an appropriate strategy or approach. Emotional intelligence goes far beyond bedside manners.
Therefore, it is not uncommon for patients to be reserved or withhold information they feel they may judged for, creating unhealthy dynamics often impossible to hurdle.
As a patient with chronic traumatic encephalopathy (CTE, neurodegenerative illness caused by repeat head traumas), I suffer a degree of trauma and PTSD. I’ve undergone considerable amounts of time — upwards of five years — stuck in fight-or-flight response due to chronic dysautonomia, previously unmanaged dysglycemia, and impacted vagus nerve and enteric function.
My case is advanced and complicated, and my mental state often reflects that.
In my personal experience, most practitioners have drastically overlooked the mechanisms of my illness concerning trauma and communication. It’s impossible to stress the significance of this enough. Every bit of research, every step towards an informed decision, can be riddled with debilitating self-doubt. The feedback loops of trauma on my pathophysiology and illness are enormous.
My personal recovery has become less about myself, although I try to maintain every aspect of positivity and hope, and more about whether or not there’s a path forward from this illness that others can follow. It means everything to me, gives me purpose, and lets me feel of service. I lean into my recovery as a powerful expression of love.
This is a very familiar process for anyone navigating a chronic condition that hasn’t yet given up. The intensity of those emotions, the danger of being vulnerable in such a weakened state, is a high-stakes reality. Even the most trained Zen Buddhist is going to get volatile. I have personal boundaries and expectations that aren’t easy to manage. Chronic illness is a rollercoaster.
“As a ‘patient,’ it’s my responsibility to navigate those realms. As a ‘human,’ it often feels impossible.”
Within the five-plus years of navigating my health journey, I’ve seen upwards of 40 different practitioners, not including the dozens of specialists, chasing wildly inaccurate prognoses. Some of these practitioners cared so deeply at such a profound level that it moved me to tears. Others simply didn’t have the capacity and took every opportunity to gaslight my experience.
Eventually, I discovered the correlation between my extremely high and sustained doses of corticosteroids for asthma and my neurological symptoms when I investigated the side effects for this medication.
When I confronted my doctor about this, the third at that time, about my symptoms of hypokalemia (which was presenting on blood tests), extremely low blood pressure, hypoxia, arrhythmia, and severe lymphatic swelling, I was told, verbatim, that I was “a total idiot and to never challenge someone who has eight more years of higher education,” than I did.
Various versions of this scenario have played out dozens of times in harsh and demeaning ways among the many doctors I have visited looking for help for my debilitating symptoms. Often, it’s less overt and more subtle, but cumulatively it’s very damaging.
That evening, I went home to an empty house and a note from my wife explaining that my illness had taken its toll on her physical and emotional well-being. At the end of the note she added: “… you’re a moron for continuing to use your asthma medication.” I didn’t see it coming. Shortly later we divorced, and I spent the next year in extreme bed-ridden pain. This, and literally hundreds of other difficult moments, stripped me of my self-worth.
I spoke with many of these doctors for less than 10 minutes and never saw them again. Others I developed long-term relationships with, often through lengthy email correspondences, Zoom conferences, lunches, etc. It sometimes got messy, personal, and we crossed personal boundaries. I was abused and I definitely abused back, as I was incapable of knowing what was acceptable and what wasn’t in these types of situations.
I am still trying to discern whether I have the proper emotional intelligence to navigate my health journey. I am trying to understand which parts of my psyche are impaired, what my trauma is rooted in, and even whether I have a full-blown split personality disorder.
Where and how in the hell did it all go so wrong? From a traumatized place, nothing is clear and evident.
I’ve sought therapy. It’s allowed some degree of healthy self-awareness and to take self-responsibility for things I wouldn’t have been able to on my own. But by and large, this therapy ends where my physical condition begins. There is little or no crossover between my mental health and physical state, as each discipline struggles to acknowledge the other.
As a “patient,” it’s my responsibility to navigate those realms. As a “human,” it often feels impossible.
“This is a very familiar process for anyone navigating a chronic condition that hasn’t yet given up. The intensity of those emotions, the danger of being vulnerable in such a weakened state, is a high-stakes reality.”
It’s difficult to be honest and reflective with health practitioners (or anyone, really) about mental health struggles. There’s a vulnerability there that is hard for people to openly connect with. And when one has a condition like CTE, there’s going to be an iceberg of trauma beneath the surface. Even the most basic biological mechanisms of the disease create trauma-induced states, such as the impact on the vagus nerve (check out the Polyvagal Theory and the brilliant work of Dr. Stephen Porges), neuroinflammation, advanced feedback loops of pain, dysautonomic states, etc.
Noise, light, movement, and anything remotely confrontational can cause me to freeze up or worse, aggravate my neuroinflammation, directly leading to intense hypoxia and exhaustion. Therefore, relating to people socially has become extremely difficult. I’m very protective of all the countless hours of therapy I have put in.
Trauma can make effective communication nearly impossible. Yet, a practitioner cannot simply exclude anyone who has considerable trauma. There would be too few patients left standing.
If you have a difficult patient, or one with an advanced chronic illness, and they haven’t talked about any trauma, I can promise you it’s the 800-pound gorilla in the room. Until at least some of that is breached, there will be a level of disconnect.
Openness and honesty about these mental states might seem like emotional baggage and are not considered to be in the repertoire of the functional medicine specialist compared to, say, a therapist. But it’s a vital topic in unraveling difficult cases. In fact, I would argue that it’s a defining characteristic of a truly holistic, non-reductionist approach to medicine.
The absolute biggest help I’ve received as a patient with CTE and neurodegeneration is the humility of a practitioner. When I feel stuck, defeated, or incapable of understanding a complex scenario, even the slightest availability to emotionally express myself has opened enormous doors towards healing.
I realize there is a hard and difficult process of setting personal boundaries, and rightfully so. Patients can be toxic. I have been toxic countless times, and I’ve tried to evolve almost as many times and perhaps failed. There’s no pamphlet for this.
But it’s a two-way street. Sometimes the simplest “How are you feeling about things?,” or “Do you want to discuss any other difficulties?,” or other comparable, easy, and relatively safe empathic gestures can open reception. I strongly encourage practitioners to learn and use some alternative communication techniques before giving up on an invested patient.
“The absolute biggest help I’ve received as a patient with CTE and neurodegeneration is the humility of a practitioner.”
I think that it’s important not to give up on those seemingly out-of-reach or “forgone” patients if they’re putting in the work and willing to listen. Unraveling those complex cases can push our collective understanding to far greater places, which will hopefully help more and more individuals.
Honesty about expectations is paramount to maintaining a healthy relationship with patients. When it shifts for you, as it inevitably will, that patient deserves to know. When a patient feels lost or has shifted their goals, they need to be given the opportunity to express it without being made to feel like a failure.
As a practitioner and a healer, you are number one. I’m not suggesting martyrdom or personal sacrifice of one’s own health and sanity.
I wish you all the best and thank you, again, for the important work everyone is doing. I am forever indebted to Dr. Kharrazian for his humility and grace, and for being such a “non-sucky,” totally awesome clinical practitioner who’s helped me along my way more than anyone else.
Blessings to you in 2020!