It’s hard for me to admit sometimes that I need to rest. But I’m getting better at it. Living with a chronic illness has in a way forced me to grow this skill. I’ve had to learn how to give myself permission to say no to things and yes to taking care of myself without feeling guilty. This is not always easy. For people who live with chronic medical conditions, it can be a tricky balance of knowing when we need a gentle nudge to carry on and when we need to rest. The answer is almost always rest.
That’s the dilemma I found myself in on a recent Friday. My body was giving me little signals throughout the week that the fatigue was coming. Every day I could feel it building in every cell of my body. The fatigue rolled in like a slow fog, and by noon that Friday, it flattened me. I made a conscious decision not to fight it any longer.
I closed my laptop for the day and I watched the Young & the Restless with my parents via FaceTime. Afterwards, I curled up on the couch and took a nap. When I opened my eyes 90 minutes later, I was shocked that it was 4 o’clock, and I had slept that long. I felt a slight twinge of guilt, and my old self started to dig up negative thoughts: I didn’t do anything productive this afternoon, I wasted the day, I didn’t do enough. I felt my breath quicken in my chest, followed by a familiar sinking feeling of shame. But then, I heard myself say so what? So what if you didn’t do anything “productive.” So what if you didn’t do “enough.” Yeah, so what? And I started to laugh.
Then I had this radical thought: What if working until noon is enough? What if taking a nap is enough? What if all that mattered today was spending time with your parents and taking care of yourself?
Western culture feeds us so many negative messages about self-care. It equates rest with weakness and believes that if something can’t be monetized, then it holds no value. I bought into these beliefs too. I used to believe that I wasn’t as valuable as “healthy” people because of my illnesses. I measured my worth by how much I “got done” or didn’t “get done.” I focused on my limitations not my capabilities.
I used to believe that I wasn’t as valuable as “healthy” people because of my illnesses. I measured my worth by how much I “got done” or didn’t “get done.”
Shifting away from this mindset and taking better care of myself has been a slow and painful process. It’s been a constant unlearning and undoing of unhelpful patterns that are ingrained in me—and in all of us. I’ve had to stop shaming myself for how much I didn’t “get done” and instead, start asking myself: How can I take care of myself today? (Present) How did I take care of myself today? (Past) How will I take care of myself tomorrow? (Future)
I wasn’t always this gentle and compassionate with myself. I have a long history of pushing myself beyond my capacity. I was the queen of overdoing and I’m still in the process of undoing that. I loved staying busy and the adrenaline rush it gave me. I wore my “overdoing” like a badge of honor: “See! Look how hard I’ve been pushing myself! Look how much I’ve accomplished!” I worked too much, I exercised too hard, I put everyone and everything before myself. And I wasn’t going to let my health get in the way.
From age 20 and onward, I was acquiring a new rare disease every five years or so. I was determined to not allow these diseases to change me or my life. I continued on at the same pace. I was grasping for normalcy. I was also in denial and running away from my grief. I didn’t want to admit that I was as sick as I was. I was trying to prove to everyone else, but most importantly myself, that I could still do all the things. I was desperately trying to hold onto my life and who I was before my diagnoses.
I didn’t want to admit that I was as sick as I was. I was trying to prove to everyone else, but most importantly myself, that I could still do all the things. I was desperately trying to hold onto my life and who I was before my diagnoses.
I still remember how weary my body felt from constantly fighting my lung diseases and coping with the side effects of my medications, all while still trying to keep up with the demands of grad school. Two months into my first semester, I became severely ill and missed three weeks of school. When I returned, I felt like I was going to fall out of my chair from weariness. I came back earlier than I should have, but I kept on going. I was afraid that if I stopped, my illness would overtake me and I wouldn’t be able to recover. I had a part-time graduate assistantship, internship hours to complete, homework, papers, group projects, classes. I was in survival mode. I felt like at any moment, someone would pull the Jenga piece from my life, and I would collapse to the ground.
My breaking point came during my third semester, when my pulmonologist admitted me to the hospital for intravenous antibiotics and around-the-clock breathing treatments. During those 10 days, my responsibilities and to-do lists were stripped from me, and all there was to do was rest and get better. One of my professors encouraged me not to bring my laptop or textbooks to the hospital. You need to focus on your health, she urged me.
In the hospital, I spent a lot of time reflecting. I meditated, I journaled, I sobbed in the arms of my mom, my husband and one of my dear friends, I talked on the phone with my counselor, I read Pema Chodron’s “When Things Fall Apart.” I was grieving not just my loss of health, but all of the other losses that accumulated over time—who I was, who I am, my quality of life, my vitality, my spark, the lack of compassion I gave myself. I started to see how I wasn’t in control of most things—no one is—no matter how much I wanted to believe that I was. I couldn’t keep pushing myself any longer. I had to learn how to coexist with these diseases and still find meaning and purpose in my life.
My breaking point became my turning point.
My life looks a lot different now. I’ve made intentional changes that prioritize my health and well-being over everything else. I started my private practice in part so that I could have more control and flexibility over my schedule and caseload. I don’t see more than four clients a day. I decide how many hours a week I work based on how I’m feeling. I don’t see clients past 5 p.m. because that’s not when I feel my best. I take breaks throughout the day. I listen to my body and let it guide me in my decisions.
Growing through these changes has been a messy and imperfect process. I’m not the same person I was before chronic illness. And in some ways, I’m grateful for that because chronic illness has taught me to be gentler and kinder to myself. It’s also led me to help others living with chronic illness through the counseling work that I do, and that has been enormously meaningful and healing for me.
A few years ago, I heard Bishop T.D Jakes say in an interview: “Pain always leaves a gift.” I quickly scribbled his words down in a notebook. At the time, it felt important and urgent to me, and also puzzling. How can pain leave a gift?
The answer to my question only came to me recently while writing this piece. As I continue to walk this chronic illness journey, perhaps, the most unexpected gift is the realization that my pain and suffering has also become my purpose.
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