Tag: self-care

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Why chronic illness made me question my self-worth

chronic illness arm clutching a white blanket

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.  

chronic illness Arm with IV and medical bracelets in hospital bed

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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How the pandemic has shed light on what matters most

Hand holding flower next to sign that reads grow.
Photo by Carla Kucinski.

If you’re feeling like you’re in the throes of pandemic reentry anxiety, you are not alone. I am right there with you. And I would imagine, based on the conversations I’ve been having lately with others, that many people are in a similar place.  

For the past 12+ months, we have all been in a continual state of crisis, stress and groundlessness that has significantly altered our lives. And now, suddenly, it’s like someone flipped a switch and declared the pandemic “over.” Except it’s not. People are still in the ICU fighting for their lives. People are still losing loved ones. We are still in a pandemic.  

What I’m noticing in my conversations is that the sudden shift from isolation to reentering the world has heightened peoples’ anxiety—and justifiably so. The fear, the worry, the overwhelm are all valid responses after more than a year of being immersed in trauma, grief, loss, isolation and enormous change.

“The fear, the worry, the overwhelm are all valid responses after more than a year of being immersed in trauma, grief, loss, isolation and enormous change.”

The common thread woven throughout the stories people have shared with me is the desire to not go back to the way their life was or the person they were before the pandemic. There is a wish to be more intentional, mindful, gentle and slow in easing into the new world we live in now and to integrate and maintain the new ways of being, feeling and thinking we’ve developed during quarantine. And there is also a deep, real fear of losing these new ways of being that have nourished and sustained us during this challenging time.

Asking the Larger Questions

The return to something or to enter something again is the fundamental definition of reentry. Except, in the context of the pandemic, what we are returning to is no longer the same. But I truly believe that resilience is inherent in all of us. You will find your way. 

If you find yourself lately asking existential questions such as, who am I? What am I doing with my life? What do I want to do with my life? What matters to me? rest assured these are perfectly human and natural questions to ponder, especially during a pandemic. It takes courage to sit with these deeper questions, not to mention it can feel scary to face them. But these questions are important ones to be asking and will help provide you with clarity and guidance.

While this time is certainly filled with anxiety, it also may be a moment to create more meaning in your life. For some, the pandemic has shown them what they can and cannot live without. What once felt necessary no longer is, and what has emerged is a spotlight on the things that matter most.  What matters most to you?

A friend shared with me recently that as the COVID restrictions began to ease, it felt as if a fog was beginning to lift in their own life. And they started to ask the bigger existential questions. They felt like they were on the cusp of a major transformation. I commonly see this happen after someone has survived a trauma and moved through the despair of their grief.  It’s like going from seeing everything in black and white to color and discovering your inner strength and resilience to survive incredibly hard things.

“It’s like going from seeing everything in black and white to color and realizing your inner strength and resilience to survive incredible hard things.”

I couldn’t help but think of these past 15 months like being in a cocoon. All of us undergoing a metamorphosis. The essence and structure of our lives changing shape. For some of us, our metamorphosis may have caused subtle, but powerful, small shifts; for others, cataclysmic, life-altering, big shifts. We have all changed and grown in some way.  

Metamorphosis of yellow butterfly perched on purple flower.
By Petr Ganaj

In a recent interview Oprah did with life coach Martha Beck, she asked her what was the greatest lesson she learned about herself during the pandemic. Martha quipped: “I really do not need that many pants.” Martha went on to share how she learned that less stimulation, more stillness and a slower pace is better for her nervous system. 

I’ve learned this lesson during the pandemic too. As someone who possesses some perfectionism tendencies and is prone to pushing and “being productive,” I’m learning how these patterns are not helpful or enjoyable for me. Like many of you, I’m in the process of unlearning what no longer serves me and integrating ways of being, thinking and feeling that are more aligned with what matters most to me right now.

Transitions are hard and painful. They’re also temporary. Eventually, we move through them and we learn something about ourselves. To borrow a beautiful and poignant quote from Bishop T.D. Jakes: “Pain always leaves a gift.”  

***

Pandemic Reentry Tips

As you move through this time of transition, keep these things in mind:  

  • You have agency.
  • Make choices that feel right and true and safe for you—not what you think you should do or what you see other people doing, but what truly feels aligned with you.  
  • This is new for all of us. It will take some trial and error to figure out what feels best.  
  • Go gently and slowly. Take your time. There’s no rush.  
  • Most of all, be kind to yourself and others as you move through this.   

*** 

Further Reflection

Below are some reflection questions I have explored (and continue to explore) on my own and with trusted loved ones. They might also be helpful to you during this time of transition.

Mug of coffee next to journal that reads Smart, Strong, Fearless, Resilient
Photo by Carla Kucinski

What did I learn during the pandemic about myself? Others? Life?  

What did I learn I could live without? What did I learn I couldn’t live without? 

What practices or habits did I start during the pandemic that I would like to carry forward? What boundaries do I need to create in order to protect and maintain these practices?

What matters most to me?

What gives my life meaning? How can I continue to create meaning in my daily life?  

What are the ways I want to connect with others? 

What would “easing back in” look like for me? 

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How to care for ourselves during times of grief

Sticks forming shape of a heart
Photo by Carla Kucinski.

“In Fearrington, North Carolina, my grandparents had lived by a pond, where geese plodded around with those curved black necks, squeaky honking. My Grandpa Miller explained that during migration, birds flew in V formation. The bird at the front, the tip of the V, had the hardest job facing the greatest amount of wind resistance. The air coming off the leader’s flapping wings lifted the birds flying behind it. Being the leader was grueling, so the birds took turns. When a bird exhausted itself, it trailed to the back, where it wouldn’t have to flap as hard, riding waves of wind that have been broken down by others. It saved its energy so that it could lead again. This was the only way to make the journey, to escape winter and make it to warmer places.”

From “Know My Name” a memoir by Chanel Miller

I have been completely engrossed by Chanel Miller’s Memoir “Know My Name” these past few weeks. Every free moment, I have been picking up the book and settling under blankets in the quiet of my room to return to Chanel’s moving story. I have never read a memoir that captures so well the complexities, the rawness, the upheaval, the pain and the grief of trauma. As I’ve been reading her book, I’ve found myself jotting down sentences and phrases and screenshotting passages that resonate with me, including the beautiful passage above that made me think of the grief process.

Grief and loss can feel like pumping our own wings, especially in the beginning. We flap them so hard, trying to overcome resistance, trying to push through to get past the pain, pretending we’re okay when we’re not, trying to move forward. But what we often need most, and what grief and loss require, is rest and care for ourselves—because grief can be exhausting. It asks a lot from us.

But what we often need most, and what grief and loss require, is rest and care for ourselves—because grief can be exhausting. It asks a lot from us.

2020 has asked a lot from us. The pandemic, racial injustice, natural disasters, the political climate, and so many different types of losses–loved ones, jobs, connection, physical touch, safety, control, normalcy, community… We are all pumping our wings, trying to cope as best we can with this challenging time.

We are all pumping our wings, trying to cope as best we can with this challenging time.

It is common with grief to feel a landslide of emotions. Grief can also affect us mentally, physically and spiritually. Loss creates a new reality and can make us not feel like ourselves. It takes a lot of energy to adjust to so much change, which is why rest is essential.

It’s okay to take breaks, to lean on others, to let them take the lead sometimes, to say no to the things that deplete us, and yes to ourselves. Self-care is critical and necessary. Our hearts are doing a lot of work this year, and it needs our love, care and attention.

So how do we even begin to care for ourselves? Self-care may look like taking first steps such as:

  • Every day, asking yourself: what is one thing I can do to care for myself today?
  • Listening to what you need and honoring it instead of resisting it
  • Allowing yourself to feel and to express your feelings—cry, scream, laugh when you need to
  • Being gentle with yourself and not taking on too much or expecting too much of yourself
  • Reaching out to loved ones who listen, love and support you
  • Engaging in physical activity that you enjoy
  • Getting adequate sleep and maintaining a consistent sleep schedule
  • Exploring new activities that may aid in your healing such as an art class, photography, writing, virtual book club, nature hikes, meditation
  • Joining a support group or starting therapy individually to support your mental health

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How to cope with trauma anniversaries

Trauma anniversaries can be difficult to cope with. Whether it’s a particular day, holiday, season or month, knowing when that anniversary (or anniversaries) occurred can be helpful in creating a plan for how you will care for yourself. I created this infographic to help normalize what you may be experiencing and help you find new ways of coping.


One of my anniversaries occurred near 4th of July. Every year after that, when that holiday approached, I would become sad and weepy and wanting to isolate. For years I didn’t know that what I was experiencing was actually a common response to a trauma anniversary.

Over the years, the event has lost its emotional charge with the help of a great therapist, EMDR and my own personal growth and healing. For me, reclaiming that day and finding new meaning was so important to my journey. I used to feel broken and helpless this time of year. But now I feel strong and empowered. I got through it. I survived. I no longer think of it as a trauma anniversary, but a celebration anniversary of me and the day I left and took back my life.

How to Cope with Trauma Anniversaries.PDFDownload
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