Mindset Changes I Made as a Chronic Illness Reshaped my Life
Even in the face of chronic pain, I chose to embrace the obstacle and thrive with it.
I’m going to be open here and say, I’ve got more than one chronic illness. I went twenty-four years not knowing I had a genetic disorder (DiGeorge Syndrome or 22Q11.2 Deletion Syndrome). You could have this condition too and not know. When I got the diagnosis, I became aware that I was almost one of those babies that didn’t survive my first year on Earth. The odds of survival were against me. Multiple genes are missing from my twenty-second chromosome, which answered every question to all the struggles health-wise I suffered with in my childhood. Just after I got the diagnosis of the syndrome, I was in my second (final) semester of college about to earn my degree — four years of hard work had ended and I hoped to go off and become successful. The diagnosis came, and it felt like a pile of bricks were repeatedly dropping on my head from the sky. The diagnosis, truth be told, reinforced my fears of not making it in life. But, this wasn’t my turning point.
When I got the diagnosis of fibromyalgia in late January, early February of this year, another chronic illness, that was my turning point. A specialist examined me for FM, and I became aware that I have 18 tender points on my body. You need more than ten for a diagnosis, and I had 18, the most tender points a person could have. Moments after I got the diagnosis, after all I had researched about it, I panicked in my car and went to the grocery store in search of comfort food. I inhaled three cupcakes that didn’t even taste very good (chucked the rest in the garbage) and stared at the wall for two hours. I knew I had entered fight or flight and tried to reshape my thinking. A mindset shift began occurring. What caused my inevitable paralysis was the fact that my life had to change yet again, and I didn’t respond well to change.
Another two hours went by of thinking; I’m either going to worsen and prolong my suffering with this illness or thrive with it. The thing about FM that people don’t get is it affects every aspect of the body. It causes brain fog, of which affects people in varying ways. It causes widespread body pain from head-to-toe. Regular headaches and migraines (I have those frequently). The pain hindered me from doing simple things such as household chores and working for more than one hour with my hands. I also learned that fibromyalgia can’t be treated, but I heard miracles happening from those that transformed their lifestyle. Just four months ago, I found myself at a crossroads.
Already, I had a fairly healthy lifestyle — I cured my insomnia, was eating a variety of fruits and vegetables each day, and I had two years of doing yoga under my belt. A couple of weeks went by and my thoughts about everything changed. All of these health conditions I have weren’t going to have me, I couldn’t allow it. In my down time, I wrote in a journal daily (still do) to figure out what I want in life. At first, I wanted to be a high-power, success at something. This diagnosis forced me to reevaluate my career, friendships, the food I had in my refrigerator and on cabinet shelves, how I spent my mornings and evenings, and I had to totally rework my exercise/physical therapy routine.
Every single thing we do has an outcome, so if I don’t exercise or eat three disgusting cupcakes because I had catapulted to fight or flight mode, the next day I’d suffer the consequences and have pain. My outcome would be pain — pain in my joints, neck, back, hips, wrists, arms, legs. Within three weeks of the fibromyalgia diagnosis, I began approaching life differently, slowing down, clearing the clutter, refocusing the goals and intentions I had set for my future, and facing my chronic illnesses head on.
One critical mindset shift came about in the face of a decision I had to make, a decision that entailed choosing between the chaotic jet-set life, or quality of life. This meant eating the right foods, exercising five days a week, sleeping 8 to 9 hours a night, not beginning my mornings in high stress, and constantly slipping into fight or flight mode if something didn’t work out or go right in my world. I discovered that my motivations weren’t aligned with my inner needs, so I refocused to quality. Vitality. Positive energy. Mindfulness. Consequently, though all of these things are great, I also had things that I needed to scale down and do less of. This meant not necessarily giving things up in my career, but doing things on a smaller scale. And this is where the reshaping of my life truly began.
I wanted a career where I could also have a good quality of life. This mindset change forced me to do a process of elimination and choose one career, one thing I loved to do. Some days, my health is a full time job, but every day I am committed to my health. Someone said to me not long ago, “Just do everything, do it all!”
Another mindset shift I made: I had to stop feeling the need to do everything. Since I had disabilities, I feared that people would view me as being lazy because I work from home. I cared a great deal about how people thought of me and I cut that out. Being faced with chronic pain, however, has taught me about resilience and despite the pain, I could still do a lot. I believe that obstacles stand in our way to show us something that we couldn’t see before and for a reason. Obstacles and challenges are opportunities to find alternatives, to grow, and to learn about ourselves and capabilities.
Not long ago, a parent that has a child with my syndrome, a chronic illness said to me, “Your pain and all you’ve endured encourages me and my daughter...” I was overcome with tears to discover how I had been an example and impacted others. I am now in the driver’s seat of my health and well-being and it’s an empowering place to be. Given the immense challenges I face daily, I greet my mornings feeling grateful to be alive and doing the things I love.