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. 

***

You are enough, yes, really

Text block reads: It's okay if you... have not made New Year's resolutions, do not have a Word of the Year, have not set any goals yet for 2021, have not set an intention, are still recovering from 2020

It’s okay if you…

– have not made New Year’s resolutions

– do not have a Word of the Year

– have not set any goals yet for 2021

– have not set an intention

– are still recovering from 2020.

Give yourself permission to just be. You don’t have to have everything figured out right now.

We can put so much pressure on ourselves at the start of a new year to set goals, place high expectations on ourselves, do more, be more, think differently, be someone or something else, etc. This can be particularly challenging if you lean toward perfectionist, high-achieving tendencies. Not to mention, we are constantly exposed to external messages all around us that tell us if we’re not setting life-altering goals at the start of the year, then we won’t live our “best year yet!” or create “the new you!” These messages only create additional pressure and false beliefs that we’re not good enough. And it’s just not true.

Maybe now is not the time to set goals. Maybe now what you need is tenderness and gentleness with yourself. Maybe what you need is more rest, more recovery. Maybe it’s time to take the pressure off yourself. You are enough.

Text block that reads: Give yourself permission to just be. You don't have to have everything figured out right now.

You are not failing.

Mint green square displaying words: You are not failing. You are human.

Let’s talk about shame. Shame is not only an emotion we feel, but also a negative belief we think and physically feel in our bodies. It can feel powerful and all-consuming, even crushing at times. It also is common for those who have experienced trauma to feel shame.

But here’s the thing: You are not failing. You are human.

Experiencing shame does not make you a “bad person.” It makes you human. We all have experiences that shape our lives, how we see ourselves, how we see others and how we see the world. We can’t change the events that happened in our lives. What we can do is learn how to undo the shame that became a by-product of our experiences.

To begin to reduce shame, we can start by naming it for what it is (e.g., “This is shame.”) and increasing compassion for ourselves—in other words, what you say to yourself and how you say it. It matters.

Imagine if someone you care for said “I am such a failure.” What would you say to them? What tone of voice would you use?

How can you speak to yourself with more kindness and tenderness to bring more self-compassion to what you are going through? How can you speak to yourself the way you would to a dear friend?

I am in the process of understanding shame and learning how to let go of it.

I am doing the best I can.

I am good enough.

I am worthy.

I am not failing. I am human.

5 Ways to Cope With Transition

Cherry tree blossoming. Photo by Carla Kucinski.

A friend of mine recently reached out to me after having a hard day at work. We met for an impromptu dinner to vent and decompress from what was a difficult day for her. Sitting across from each other, I listened intently as she recounted the details of the day. The theme throughout her story was fear, worry, stress and a feeling of instability. My friend was in the throes of transition. She was still just a few months into this new role and trying to adjust to all the new duties that came with it while simultaneously trying to cope with other transitions in her personal life. It is not an easy place to be in.

We have all experienced phases of transition in our lives, whether it’s adjusting to a new role at work, the end of a relationship, or a health diagnosis we weren’t expecting. Even when it’s a positive phase in our life such as buying a home, becoming a parent or going back to college, the transition into this new phase of our life can be met with anxiety, frustration, fear, and even grief or loss.

Why transition can be difficult

Transition can be extremely uncomfortable. Often, what causes that uncomfortableness is the space between where you are and where you want to be. The tension between these two can make us feel stuck, leading to feelings such as frustration, sadness, anger and self-doubt. We can also experience helplessness and hopelessness. And almost always, some type of loss is experienced.

I remember the night before I had planned to hand-in my resignation at a former job, I bawled my eyes out. Even though I knew in my heart and my gut that this was the best decision for me, I felt a deep sadness about this major change in my life that went beyond missing the people I work with. I wasn’t just leaving a career that I enjoyed for 15+ years, but also everything that I knew and that felt familiar. It felt like stepping into a great unknown. Why? Because I was losing my sense of security. I was 37 years old, entering graduate school to become a mental health counselor and embarking on a brand-new career. I was TERRIFIED.

When we experience major transitions in our life, sometimes the tension can come from changes to our identity as a result of the transition. I know I have experienced many transitions where I found myself asking: Who am I? Who do I want to be? When I left my job to go back to school, so many of my identities shifted. I was now a student and no longer a boss. I went from being an equal financial provider in my family to minimally contributing financially. Like my friend in her new role at work, I was in a period of change and growth.

I got through these growing pains by being mindful of what I was feeling and thinking, by practicing compassion toward myself, and by learning patience with not only myself but the process of unfurling into this new phase of my life. These practices are strongly rooted in mindfulness. I’ve broken down some of these tips below and elaborated on how you can integrate these skills into your life.

Bowl of raspberries resting on blank page of journal.
Photo by Carla Kucinski.

Tips For Coping With Transition

Recognize that you’re going through a hard time. There is so much relief that can come just from validating our own experience and having compassion for the difficult time we are having in the moment. Name it to tame it. When we acknowledge what we are experiencing, it can take away some of the power of whatever difficult emotions we are feeling. It’s almost like slowly releasing some of the air from a balloon. We can feel some sense of relief, even if only for a little while.

Transition is a part of life. Accept that we all encounter transitions in our life and that each transition comes with its challenges. It’s universal. We all go through it. You are not alone in it. Recognizing this can help us feel less isolated in times of suffering and may even provide some comfort in knowing that we all experience this.

Practice self-compassion. Ask yourself what you need? Is there a word or mantra you can say to yourself in difficult times that speaks to you? A phrase or affirmation that brings you comfort or hope? One affirmation I heard recently that I just LOVE is “the path will open.” It captures hope and strengthens trust that a new door or path will open to something different. Or maybe instead of a phrase it’s an action you need to take such as moving through a few of your favorite yoga poses, making yourself some tea or writing in your journal.

Reach out to a trusted friend. Connection is key in times of distress. Talking with a trusted friend about your experience can help you feel loved and validated. Being heard and understood can be deeply healing and help us feel less isolated and more connected to others and ourselves.

Recognize the wins. Sometimes when we are in the throes of transition, and therefore in deep suffering, we can lose sight of how far we’ve come. Now, I’m not suggesting you minimize your pain or be all Pollyanna, pretending that everything is wonderful. But it’s important to recognize the strides to help give us a kernel of hope. So maybe you’re adjusting to the end of a relationship and feelings of grief. But as you reflect on who you were in the relationship and who you are now, you realize that you have a lot less stress in your life because of the toxicity in the relationship and that your social circle has expanded and deepened because you’ve reached out to friends for support. Or maybe you’re in a new role at work that causes self-doubt, but when you pause to look at the gains this past week, you realize “I really nailed that presentation” or “I had a breakthrough with a client” or “it was a stressful day, but I got through it by reaching out to a friend.”