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Resilience: The Correlation between Neurodiversity and Chronic Illness

I sat on the floor fighting back tears. The weight of the world was on my shoulders and every day I wondered how long I could keep carrying it all. I felt stuck. Not only was I taking care of two children under the age of four who weren’t sleeping through the night, I was also waking up every day in pain, battling chronic daily headaches and fatigue, and cooking every meal from scratch to support my limited diet and sensitive stomach. I wanted off the hamster wheel. I wanted to be like other moms who took their kids to the park or the beach as if it was no big deal. Why did it feel like I was splintering into pieces? How did I find myself here after all the hard work I had put into my life?


Let’s pause here for a spoiler. That story started out depressing, so let’s flip to the last chapter and confirm there is a happy ending. The season I just described was back in 2009, and although it got worse for a time, it also eventually got much better. In 2014, I began a journey that helped me recover from chronic illness and food sensitivities, and I am living a normal life now. Life is still messy and imperfect, but now I can navigate stress without drowning in it. How did I get from crying on the floor and totally overwhelmed, to thriving in my life and career? I learned how to build resilience.


Resilience can be defined as the ability to maintain flexibility in thoughts, emotions, and behaviors in the face of stress and to bounce back or recover readily after adverse life circumstances. I like the one-word definition of “buoyancy” because it conjures the image of a beach ball being pushed under the water and then as soon as the pressure is off, the ball bounces back out of the water and floats happily on the surface once more.


It became apparent after my children were born, and my health began to spiral, that my resilience was almost non-existent. At the time I did not have the support or the tools to do anything about it, even though I cried out for help and searched for answers. I did what a lot of people in the church do: I had the pastor and a small group of people pray over me (which was really encouraging, but it didn’t change anything); I confessed every sin I could think of; I tried to have a good attitude; I prayed and read my bible; I spent time singing and worshipping (which usually turned into sobbing); I wrestled with the idea of suffering and refinement, wondering if my own weaknesses and need for growth necessitated this season; I tried harder. All the attempts only added to my to-do list without getting at the root of the problem, and I kept getting sicker until I found a different way to move forward. There were three keys that helped me to build resilience and get well.


The first key was to learn about nervous system regulation. I began to understand how my life was affected by my nervous system state, and how much time I was spending in a dysregulated stress response, bouncing between fight, flight, freeze and fawn. I gained access to a toolbox and a community of people on a similar journey, and I learned how to cultivate a regulated and balanced nervous system. This was incredibly effective and empowering. I was able to step out of survival mode so I could be present and enjoy life, and I began to heal. My chronic pain faded away, my stomach settled, and I began to sleep restfully. Life came back in full color, and I was grateful for every little gift. Once I had regained my health, I was offered a job as a coach, and I accepted, eager to encourage others along the way.


However, maintaining consistent nervous system regulation took a lot of effort for me. I was willing to do the work, and grateful for how my life had improved. Yet, no matter what I did, I had to get up the next day and work at it again. What was I missing? In the spring of 2022, I was diagnosed with ADHD, and addressing this was the second key to building resilience. The diagnosis came as a relief. Not only did it explain my propensity toward chronic illness (1-2), I also discovered that Neurodiverse brains dysregulate more easily than Neurotypical brains [3,4]. Just as a child with dyslexia would expend more energy learning to read, I had to exert more effort than someone with a Neurotypical brain to stay regulated. It was validating to know that the struggle was real and there was an explanation, and it was important for me to accept this about myself. Labeling dysregulation as bad or wrong increased the pressure to try harder, chipping away at my resilience, so I needed grace and self-compassion. Getting a diagnosis and adding medication [5] made it easier for me for two reasons: First, with proper support my brain no longer craved the adrenaline from an emotional dysregulation rush that both energized me and burned me out. Second, with better impulse control, I experienced a growing ability slow down my emotional responses and to engage my thinking brain before reacting. Understanding, accepting, and supporting my Neurodiversity was an important key.


The third key to building my resilience was strengthening my mind-body connection. There is a growing body of research indicating that those with Autism and ADHD lack interoceptive awareness [6,7]. Interoceptive awareness is the ability to recognize and respond to internal bodily signals, including physical sensations and emotions. Often Neurodiverse individuals do not notice when they are approaching dysregulation because they are disconnected from the early signals that would tell them to take a break or set a boundary. There are many simple, easy to use tools that help to build interoceptive awareness and grow the mind-body connection. Practicing these tools increases resilience by reducing and preventing the number of dysregulated meltdowns or shutdowns, and as a result, positively impacts our relationship with ourselves and others. Engaging with tools that connected me with my body and my emotions in a healthy way contributed significantly to my resilience. The increased awareness took away the need to work hard all the time at regulation. I could do it with ease and self-acceptance in a way that finally felt sustainable.

Thankfully, resilience is something we can all cultivate, and sharing this message has become my life’s work. As a Resilience Coach, I have curated a library of many fun and creative tools that can help individuals learn about themselves and their nervous system so they can expand resilience. The tools are simple, customizable, and diverse, making them suitable for a variety of brains. Every brain is capable of learning, changing, and growing new neural networks that support a more balanced nervous system. Neurotypical brains benefit from learning self-regulation skills as well. This is especially true for NTs if they are in a household with NDs. Everyone benefits when anyone in the family chooses to deepen resilience. The positives ripple out and bless those around us.


Here are a few fun and easy ways to build resilience and expand your window of tolerance:


AWARENESS and ACCEPTANCE

Start to connect with yourself and get curious about what you notice. Observe without judgment and accept where you are at with self-compassion. Many of us are disconnected or numb to our bodies and emotions until they get loud. It’s like ignoring the check engine light on the car until one day the car won’t run. Of course we pay attention when the car won’t start, but can we tune in to the early warning signs? Pausing to check in with yourself and notice on a regular basis without judgment builds mind-body awareness, giving you the ability to recognize sooner when you are reaching the edge of your window of tolerance and need a break.


PLAY and CONNECT

Color with your children or by yourself, play with clay or playdough, dance, do art, laugh with friends, blow bubbles, draw with chalk, take an art class. Find some kind of hobby or activity that is fun. Choosing to regularly play (without the need to produce or perform for others) builds resilience, and playing with others strengthens our social engagement system, signaling safety to the brain.


RELAX

Practice cultivating a sense of calm on a regular basis. Experiment until you find something that works for you. There are many options such as breathing exercises, swaying back and forth to calming music, listening to a guided imaginative visualization, taking a bath, or walking in nature while taking in the sights, sounds and smells. Practicing a few minutes of intentional and fully present relaxation every day can be lifechanging. While watching Netflix, scrolling on our phones, or playing video games can be fun and relaxing, these activities do not have the same impact on the brain and body as practicing relaxation while being fully present.


SUPPORT and ACCOUNTABILITY

Building resilience takes time and patience, and sometimes we need support and encouragement along the way. Find people who want to learn with you. Look for materials, videos or a program that will walk you through a learning process so you can better understand yourself and your nervous system.


If you struggle with anxiety or depression, have ongoing physical symptoms, have trouble sleeping or winding down, often feel overwhelmed, experience shutdowns or melt downs, or live with someone with one or more of the challenges I’ve described, you may benefit from learning more. Building resilience through regulation is one of the most empowering gifts I have given myself. It’s a gift you can have too!


If you would like to learn more about my Resilience Services, check out my website: janamsmith.com.

 

Citations

1.     Dell-Osso, L. et. al. (2023). Emotional dysregulation as a part of the autism spectrum continuum: a literature review from late childhood to adulthood. Frontiers in Psychiatry, 14. https://doi.org/10.3389/fpsyt.2023.1234518

2.     Soler-Gutiérrez, A. M., Pérez-González, J. C., Mayas, J. (2023). Evidence of emotion dysregulation as a core symptom of adult ADHD: A systematic review. PLOS ONE. https://doi.org/10.1371/journal.pone.0280131

3.     Battison, E. A. J., et. al. (2023). Associations between chronic pain and attention-deficit hyperactivity disorder (AHDH) in youth: a scoping review. Children, 10(1). https://doi.org/10.3390/children10010142

4.     Li, D. J, et al. (2022). Asociations between allergic and autoimmune diseases with autism spectrum disorder and attention-deficit/hyperactivity disorder within families: A population-based cohort study. International Journal of Environmental Research and Public Health, 19(8). https://doi.org/10.3390/ijerph19084503

5.     Author’s note: Medication is not appropriate for everyone who has a Neurodiverse brain, and medication alone will not build or maintain resilience. Each Neurodiverse individual has different diagnoses and different needs. A professional well-educated in Neurodiversity can help to customize proper support.

6.     Wiersema, J. R., Godefroid, E. (2018). Interoceptive awareness in attention deficit hyperactivity disorder. PLOS ONE. https://doi.org/10.1371/journal.pone.0205221

7.     Schauder, K. B., et. al. (2015). Interoceptive ability and body awareness in autism spectrum disorder. Journal of Experimental Child Psychology 131. https://doi.org/10.1016/j.jecp.2014.11.002

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