When Life Feels like Survival Rather than Living: The Highs and Lows of Dysautonomia

lifestyle medicine Apr 11, 2024

As someone living with dysautonomia, I know all too well the challenges of navigating the constant ups and downs. When I reflect on the season when my health was at its absolute worst, I remember that some days, even the most basic tasks like showering would leave me feeling utterly drained. The anticipation of social events or outings, which should bring excitement, would instead fill me with dread and anxiety. Especially before knowing what was going on with my body, I felt as if I was trapped in a body that just didn't seem to get the memo. My mind was so ready to tackle the day's responsibilities - the dishes, the family obligations, the plans with friends, an 8 hour work day that felt more like bootcamp than normality. My autonomic nervous system had other plan that my mind was not ready nor willing to accept. Stuck inside the survival mode that is sympathetic dominance, triggering a cascade of symptoms that left me feeling powerless.. and less than thriving in my early 20's. 

I remember attending social events with friends and family, longing to be present and engaged, but my dysregulated sympathetic and parasympathetic systems had other ideas. Simple things like standing up too quickly or being exposed to certain environmental triggers would send my heart racing, my blood pressure plummeting, and my digestive system into chaos. I didn't want to draw attention to myself, nor did I even know how to explain what was going on if people were to ask. 

Through a series of medical visits, elimination diets, 5 specialists, 2 naturopaths, and bottles upon bottles of supplements, I finally found TCLM as a patient and discovered what was actually going on and why no diet change or supplement would resolve the issues I was dealing with. I wish I could say that I am completely healed for your sake if you too struggle with dysautonomia. Though I do stills struggle, I am genuinely grateful for the things I have learned about myself along the way, and the unexpected inner healing that has resulted from my chronic illness. 

The truth is, dysautonomia doesn't exist in a vacuum. There is often an intricate interplay between the physiological symptoms and unresolved mental/emotional struggles. PTSD, anxiety, and other stress-related issues frequently accompany these autonomic nervous system disorders, but is important to note that dysautonomia is not PTSD or anxiety. 

It's a vicious cycle - the body's sympathetic overdrive fueling mental distress, which in turn exacerbates the physical symptoms. And all too often, this complex relationship gets misunderstood or dismissed by medical professionals who are quick to label it as "just anxiety."

This is why I'm such a passionate advocate for taking a whole-person approach to managing dysautonomia. Failing to address both the mind and the body will only lead to continued struggle and "helplessness." I've had to navigate this process through my own long, winding journey, and I can attest that it's the only way to find true, sustainable progress. For me personally, progress has looked like accepting my limitations, creatively working around and with them, rather than pushing myself through life. 

It hasn't been easy, but learning to be my own best advocate has made all the difference. I've had to become fluent in the language of dysautonomia, educating myself and my care team on the nuances of my condition. And I've had to get comfortable with others misunderstanding me, dismissive attitudes or quick-fix solutions that so often characterize the dysautonomia patient experience. Rather than feeling victimized, I have found that it is better for me to remain understanding toward others, patient with myself and others, and never lose compassion for those who may not understand (at least not right now) what it's like to struggle with chronic illness. One thing we can all relate to in one way or another is suffering. If you are alive and breathing, I'm sure you are no stranger to suffering. Keeping this in the front of my mind has been helpful when I'm tempted to feel resentment and frustration toward others or myself. 

I know that speaking up and setting boundaries can feel unnatural when you're accustomed to pushing through in silence. But I'm here to tell you that this type of self-advocacy is absolutely essential on your healing journey. Get crystal clear on what you need to thrive, and don't be afraid to unapologetically communicate that to your provider team, family, support system, etc. 

For me, the healing process has involved being consistent in several key areas:

  1. Truly listening to my body's cues when it comes to food choices, lab work, and treatment protocols. I've learned not to blindly follow a plan that doesn't resonate with my unique symptoms and physiology. If something makes me feel worse, I stop, no questions asked. And for my POTS friends out there - stay salty, but always consult your provider, especially if taking sodium-related medications.
  2. Refusing to people-please at the expense of my own well-being. That nagging guilt voice may try to push me to overcommit, but I know my limits. When I start saying yes to too many demands, I pause to reflect - am I truly acting from a place of love, or am I chasing external validation?  If the latter, it's time to set some boundaries, even if it means disappointing others. Their inability to graciously accept my "no" speaks more about the relationship than anything. People-pleasing might expose idolatry in my own heart by seeking the approval of others. If this is the case, I then have to change my thinking and ask myself hard questions as to why this is the case. 
  3. Addressing my underlying belief systems. While my disease is not "in my head," I recognize that my thoughts and mindset can either accelerate or impede my progress. I'm committed to questioning where these beliefs came from, and aligning them with the truth I claim to embrace. This isn't always easy, but it's vital work. Having mentors, counselors you trust, and a support system who share your world view can be so helpful and healing.
  4. Finding the right movement prescription. I've learned that no movement is worse than anything. However, too much of the wrong kind of movement can be just as detrimental.  Gentle, restorative modalities like Pilates, walking, and fascial release have been game-changers for my recovery, muscle tone, and circulation. Try compression stockings if you notice too much blood pooling in your legs. 
  5. Getting comfortable with change. When you struggle with an autonomic nervous system disorder, symptoms can be all over the place any given day. A few years ago, I would define myself as very routine-oriented, possibly rigid, and having a great need to control my schedule and external factors. Chronic illness came into my life and destroyed my false sense of control I had on my body, my life path, and the response of others around me. I've learned to accept the things I cannot change, grow through the things that I can change, and take things as they come. One day at a time. Sometime one moment at a time. Learning to be flexible with my plans, my diet, my routine, and accept my limitations has been key. 


If you're walking this same path, know that you're not alone. The highs and lows of dysautonomia can be beyond challenging and isolating. But with self-compassion, determination, and a commitment to addressing both mind and body, there is hope and a serious journey of growth ahead. Sometimes we don't necessarily get the answers and solution we want, but we may be gifted what we need in order to grow, transform, and be made new. 


50% Complete

Two Step

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua.