Finding our ways to the balanced seesaw of chronic illness

It’s no secret that living with lupus or other chronic illnesses often feels like a constant game of tug-of-war. One part of us aches to chase after our dreams, tackle projects, and seize life, while the other part is continually reminded of the need to slow down, conserve energy, and avoid flares.

I often liken it to an emotional and physical seesaw, one that few understand unless they’ve walked our road.

The hardest part of this balancing act is the unpredictability. Some days, I wake up feeling almost like my old self, before my lupus diagnosis. Those are the days I tend to overdo it because I want to pack in all the things I’ve had to let sit on the sidelines: catching up with friends, tackling a big project, or even cleaning out that closet I’ve been avoiding.

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But here’s the cruel twist I’ve learned after years of experience: Pushing too hard can easily send me spiraling into a flare, sometimes undoing days, weeks, or even months of careful pacing and rest.

This constant internal battle can lead to a unique kind of stress. Living with lupus and other chronic illnesses isn’t just about managing physical symptoms; it’s also about learning to navigate the psychological toll of having an ever-present “stop sign” in our lives.

From pressure and grief to balance

The pressure mounts because we want so much to be productive, to feel accomplished. We watch others in real life and on social media seemingly breeze through life’s milestones, ticking off accomplishments, and let’s just be honest: It can be disheartening. There’s a hidden strain in wondering how much we’d be doing if only our body would cooperate.

But this stress isn’t just about productivity; it’s also deeply personal. Chronic illness forces us to rethink our identity, sometimes leading to a kind of grieving process.

Thinking of that, I’m taken back to shortly after my diagnosis. I’d gone to college to be a registered nurse and wanted to take care of people, but there I was, bed-bound with a nurse coming to my home three days a week to take care of me. I was so heartbroken, bitter, and completely overwhelmed. I felt as if I were sleeping my days away, and all of my dreams were dying.

Maybe you used to be the friend who’d always show up to help with a move, or the person who took pride in putting in extra hours at work. When illness changes these aspects of who you are, it’s a loss. Disease forces us to say goodbye to a version of ourselves and learn to welcome a new one who’s bound by different rules and limitations.

Our grief is real and valid, yet it’s something that can feel hard to talk about. Society is often uncomfortable with negative feelings, and friends and family encourage us to “look on the bright side” or remind us that “it could be worse.” But grieving a life you once had, or the one you imagined for yourself, is not about giving up. It’s about honoring that loss, processing it, and, ultimately, finding a way to move forward with grace and resilience.

Over time, I’ve learned that finding balance is about adjusting to the daily rhythm of what my body allows. Some days, the balance tips in my favor; other days, I must accept the need to step back, conserve, and trust that it’s OK to let things go for the sake of my health. And this learning process doesn’t happen overnight; it takes years to figure out the limits and adapt accordingly.

But here’s the glimmer of hope that deserves a nod: Chronic illness may change the way we pursue our dreams, but it doesn’t have to steal them entirely. True, the path may be slower and might take more detours, but it’s still our path.

There’s beauty in the creativity that comes from finding new ways to accomplish things, such as embracing flexibility and valuing small wins as much as big ones. I’ve realized over many years that having only so many “good” hours of energy each day has helped me figure out what truly matters and what needs to be my top priority.

This journey is by no means easy. There’ll always be challenges, days where we feel frustrated, and times we question if we’re doing enough. But even with the seesaw effect of energy highs and lows, I see warrior after warrior out there living the heck out of their lives and accomplishing some incredible goals! These men and women motivate me every single day!

So take my words as a gentle reminder that even on the hard days, take a deep breath, honor where you are, and remember: Even if your body limits you, your spirit remains unbound.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.