At 31, my life feels like it’s on an indefinite hold. Through the countless treatments and specialists, I’ve seen, life with chronic illness has felt like I’ve been stuck in a never-ending loop of disappointment and loss. Every day seems to blur into the next, and I find myself feeling the need to grasp something, anything, that resembles the joy and excitement I used to feel.
I’ve been fighting for a long time, all the while not making any progress, losing my ability to do my favorite activities, and then losing my job recently. It has been a painful reminder that illness has not only taken my health but also my sense of purpose and identity.
But I’m still here, breathing, moving the most I can, and surviving. While surviving sometimes feels like it’s all I can do, I’ve been asking myself: Is it possible to find joy again, even while navigating this hellish illness?
There’s a part of me that still wants to believe that I can find joy again. I want to believe that I can create a life that has meaning, even if it looks different from what I imagined. The path forward is still unclear, but I have enough self-awareness to realize that I need to work towards finding joy in ways that fit within the limits of my situation.
Here are 6 things I’m hoping to explore to help me get there:
I’ve spent so much time fighting against my illness, trying new treatments, pushing my body to do more, searching for answers. It’s been an obsession and when my iPhone told me that my average screen time went up 2 hours, I knew I was doing too much.
While that effort comes from a place of hope, it also leads to frustration when things don’t improve. I’ve been thinking about the idea of surrender. Over the past several months, I’ve had many moments of giving up. Sometimes I would even say out loud, “You win,” “What’s the point,” “Nothing will change,” an unhealthy form of surrendering. Now, I would like to see it not as giving up, but as accepting that some things are out of my control.
I want to work toward letting go of the need to fix everything. I know I’ll always want answers, but I want to balance that with acceptance of where I’m at right now. It’s not about giving up on getting better, but about finding peace in the present moment, even if I’m still struggling. If I can accept my reality as it is, I might be able to make room for moments of peace, even when my symptoms are at their worst.
Learning to surrender in this way could help reduce the constant mental battle I have with myself, freeing up energy for things that matter, whether that’s taking care of myself or finding small moments of joy in my day.
If you’ve read a few of my blog posts already, you might have noticed I often bring up the word “uncertainty.” This is because chronic illness makes it hard to look ahead since the future feels so uncertain. I find myself spending a lot of time thinking about what I can no longer do and worrying about what’s next. I want to shift my focus toward being present, to start noticing what’s happening around me in the moment.
Practicing mindfulness is nothing new and something I’ve been wanting to incorporate more into my life. To find more contentment in the here and now, I know I need to stop dwelling on the past and worrying about the future. Here are a few specific examples I want to work on:
Listen to more music and podcasts: I’ve always loved music but sometimes I forget to really listen to it. I want to set aside time to immerse myself in music or an interesting podcast. It’s a simple way to reconnect with something I enjoy.
Appreciating the taste of food: Most days, my illness makes it hard to even want to eat, as it leads to digestive symptoms, but on days when I can enjoy a meal, I want to really appreciate it. I want to focus on the experience of eating instead of seeing it as just another task to get through. Put the phone away, turn off the TV, eat slowly, and mindfully.
Savoring simple activities: Even though I can’t be as active as I would like, my daily walks are sometimes my biggest highlights of the day. It’s an activity I can often take for granted when I’m so focused on my illness. I would like to work on feeling gratitude in everyday tasks such as, taking a warm shower, doing the dishes, watering the flowers, and brewing a cup of tea.
Connecting with loved ones: Whether it’s a phone call to a friend, a conversation with my wife, or sharing a quiet moment with someone, I want to focus on the feeling of connection.
By focusing on these small, ordinary moments, I hope to shift my attention away from what I’ve lost and toward what I still have.
I used to have the energy and focus to throw myself into projects whether it was work, art, or coming up with business ideas. Chronic illness has limited my creativity, often interrupted by pain or exhaustion. Now, I’m trying to see my creativity not as something that is broken, and instead embracing the imperfections.
Whether it was from watching the two hit series Shogun and Pachinko or not, I’ve started becoming fascinated with Japanese culture and ideas lately. There’s a Japanese concept called Wabi-Sabi, which celebrates the beauty in imperfection. I’m working on applying this concept to my creative process. My writing and thoughts don’t need to be perfect or polished. They can be raw and fragmented, a reflection of the brokenness I sometimes feel inside.
Creativity allows me to escape and express my experience with illness. I’m no longer creating in spite of my illness; I’m creating because of it. Each piece of writing is a testament to my survival, and while it may not be perfect, it’s mine.
Before chronic illness, my life was defined by clear goals. I had a job, ambitions, a plan. That had all been thrown into a pit of chaos, and I felt like I had lost my purpose. What I’m trying to tell myself now is that purpose doesn’t have to be linear. It doesn’t have to be tied to a job, diagnosis, or even a clear goal.
The purpose can be fluid. Most days, my purpose will most likely be simply getting through the day. Other days, it will be sharing my story with others, creating, and connecting. My purpose isn’t fixed, it shifts and changes, just like my illness.
I’m hoping this realization can help me let go of the pressure to “find” my purpose and see it as something I can create day to day. It’s not about achieving some grand goal, but knowing you’re still moving forward, however slowly.
Chronic illness is incredibly isolating. It separates you from the world, from your friends, from the life you used to know. After constantly canceling plans, having the same answer to the dreaded “How are you doing?” question, family and friends have begun to reach out less and less. But in that isolation, I’m trying to seek a new kind of connection, a connection with others who might be on a similar path.
Whether it’s through online communities, support groups, or conversations with fellow sufferers, there’s a deep sense of comfort in knowing you’re not alone in this battle. Joy can be found in the shared understanding, the validation, and the simple act of being seen. I’ve realized it doesn’t always have to come from within. It can come from others, from knowing that you are part of a community that gets it.
One of my big goals with this blog is to create a virtual community for those dealing with chronic illness or for loved ones who want to understand it. I would like to share stories, frustrations, small victories, advice, and support. There’s joy that can be found in that connection, in that shared humanity. It’s not the joy of being perfectly healthy or normal but rooted in understanding.
Right now, the excitement of career success, the thrill of travel, active retreats are big joys that feel rare and out of reach. However, life is not devoid of joy; it just comes in smaller, quieter packages now. I’ve started calling these moments micro-joys.
Micro- joys are those small sparks of happiness that might seem insignificant, but when added up, have the power to sustain you when everything else feels overwhelming. They might be as simple as finding a new show to watch, a new Youtuber, planning my favorite meal, the feeling of fresh sheets on my bed, or sharing a moment of laughter with my wife.
I’m learning to seek out and savor these moments. They shift my focus away from what I’ve lost and toward what I still have. These micro-joys don’t solve my problems or take away my pain, but they remind me that even in the hardest moments, there is still beauty to be found.
Living with chronic illness has forced me to reimagine my life in ways I never wanted to. It has stripped away many of the things that used to bring me joy, but it has also opened my eyes to new possibilities, new ways of being. It’s not something I can “reclaim” from my past, but something I can redefine, reshape, and rediscover in the present.
I hope that by sharing this journey, I can help others who are also searching for ways to find joy through their own sufferings. I’m still learning every day. I try to remind myself every day that joy isn’t gone, it’s just different now. Even in this new, uncertain life, there’s still joy to be found if I’m willing to look for it.
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