How I’m Redefining A Meaningful Life With Chronic Illness

Before I became sick, I viewed accomplishing goals and meeting high expectations as requirements for creating a meaningful life. When I fell short of my expectations, I often felt like I had failed. This was anything from getting good grades, to being more social (and less reserved), to running x number of miles on the treadmill or not making mistakes in flute competitions. When I didn’t earn the grade I wanted or when I fell short of any of my expectations, I immediately saw myself as a failure. But I never gave myself a pat on the back for the effort I put into things — I was doing the best I could. I never credited myself for the smaller, more meaningful little accomplishments and moments of joy. I think I ignored the peaks and accentuated the valleys.

My chronic illness has encouraged me to reevaluate my relationship with the meaning of expectations and goals, such that my perception of what is actually important in life has shifted. I have had to learn that reaching or accomplishing “big” goals or successes is not what makes me a valuable person. Because my old goals are no longer attainable, continuing to judge myself based on them would only hurt my view of myself.

Something that has been harder for me to accept is not being able to do the “smaller” things on my to-do list — the constant need for flexibility every single day. I am still working on not feeling frustrated when I can’t just do my laundry or when writing a blog post takes me all day instead of an hour because my mind is so foggy. Accepting that our bodies call the shots at the end of the day is a hard pill to swallow — but I’m working on it.

When my last two graduate school classes started, I was reminded yet again that no matter what I do, I don’t actually have control over my body. Yet, rather than being gentle and taking actions that were in line with self-care, I still fought the realization and tried to live up to expectations that were not in the realm of what I could physically do each day. During a bad flare several months back, I recall waking up early each morning with the intention of getting a “good” start on my assignments. But unsurprisingly, I woke up with headaches, brain fog, dizziness, fatigue, and a racing heart day after day. Deep down, I knew that these would not be days in which I would have nearly enough mental or physical stamina to do school work. Yet, I (of course) still put too much pressure on myself to at least just try as I wanted to get it done. This only led to a great deal of anxiety because I unsurprisingly couldn’t do the schoolwork. Despite how long I sat, tapping my foot at my desk and just willing myself to focus, I couldn’t. And there was nothing I could have done to have changed this dilemma. I couldn’t flick a magic wand and be granted mental clarity or a slower heartbeat.

Some days the “shoulds” still get the best of me and I try to push myself to do unrealistic things rather than resting or doing whatever my body and mind need for comfort. While that day could have been a much gentler day if I had listened to my body’s needs, I simultaneously realize that blaming myself for wasting time (by just sitting there not working) was also not beneficial for my mental health. Instead, I tried to allow that day to be a reminder of the importance of practicing forgiveness and giving myself grace, particularly on the harder days. This also served as a reminder of the importance of “surrendering,” which I view to mean accepting, rather than giving up. Surrendering to my body’s needs and taking care of my body (and soul) is always the most compassionate thing I can do.

Little by little, I’m starting to see that productivity doesn’t make my life any more or less valuable. What makes this life meaningful is the joy and compassion I find in special moments and meaningful connections. It’s about the relationships with people who make me feel good and who allow me to be myself around them. It’s about the hobbies that I love to do, and not at all about reaching “perfection” in these hobbies. It’s about creating expectations that are centered around fulfillment instead of solely based on big accomplishments or the need to be better. I guess I’m softening my own beliefs to the understanding that a meaningful life is a life centered around finding peace and fulfillment, and not productivity. My goal is now to seek happiness (or “okay-ness,” if this is more attainable).

In small steps, I am realizing that it is perfectly okay to soften my expectations and to work on making choices that make me feel good and whole — choices that allow me to care for and love both myself and others. Ultimately, a life focused on finding peace and gently taking care of ourselves can be even more beautiful and meaningful than a life focused on external achievements.

This essay is an excerpt from “Gracefully Ill: Finding Peace in the Chaos of Chronic Illness”, available here.