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When you live with chronic illness, like I do with Idiopathic Intracranial Hypertension (IIH) and Long COVID, there’s a lot people don’t see. To the outside world, we may seem okay on the surface, especially if we’ve mastered the art of masking our pain or discomfort. But what many don’t realize is the sheer effort it takes just to get through the day, let alone thrive.
If you’re new to living with a chronic illness, you’ve likely already encountered the invisible burden of having to explain or justify your symptoms, energy levels, or the ever-changing needs that come with your diagnosis. It can be frustrating, isolating, and downright exhausting. But with the right strategies, it’s possible to find your way through the fog and create a life that works for you. Let’s dive into the daily realities of chronic illness and explore ways to cope, one step at a time.
Disclaimer: While I offer tips for maintaining wellness while dealing with a chronic illness, I’m not a licensed medical physician, psychotherapist, or psychologist, and I’m not offering medical or psychiatric advice.
For my full disclaimer policy, go here.
Navigating the Day-to-Day Realities of Chronic Illness
The Daily Dance: Balancing Pain and Energy
One of the biggest misconceptions about chronic illness is that it’s predictable. It’s not. No two days are the same, even with careful planning. As someone living with IIH and Long COVID, I never know if I’ll wake up feeling functional or utterly drained. And sometimes, even my best days still come with a layer of exhaustion or discomfort that others might not notice.
Coping Strategy: Prioritize and Pace Yourself
The key to managing unpredictable energy levels is learning to prioritize what truly matters. I’ve found that creating a loose daily routine that includes flexibility helps. On lower energy days, I focus on small wins—maybe it’s just answering a few emails or prepping a simple meal. Pacing is everything. I use tools like timers or the Pomodoro technique to break tasks into manageable chunks. And most importantly, I listen to my body. When I need to rest, I rest without guilt.
Invisible Symptoms: What You Can’t Always Explain
Most chronic illness symptoms are invisible. While IIH can cause debilitating headaches and Long COVID may bring intense fatigue, these symptoms often go unseen. People may expect us to look sick, but more often than not, we look fine—even when we’re not.
Coping Strategy: Be Open About Your Limits
It’s tough explaining invisible symptoms, but I’ve learned that being transparent with loved ones about my energy and pain levels makes a huge difference. It reduces the pressure to “perform” and helps others understand what I’m going through. If I know an event or task might be overwhelming, I give people a heads-up about my limits or possible need for breaks. Setting these expectations early on can save a lot of frustration—for both you and those around you.
The Guilt of Saying “No”
I can’t count the number of times I’ve had to cancel plans at the last minute. The guilt that comes with it is overwhelming. There’s a constant fear that people will think I’m unreliable or that I’m using my illness as an excuse. It’s a guilt that only those in the chronic illness community truly understand.
Coping Strategy: Set Boundaries with Compassion
Learning to say no without guilt is one of the hardest yet most essential skills. I’ve learned to communicate my boundaries kindly but firmly, knowing that saying no today allows me to say yes when it really matters. I remind myself that setting boundaries isn’t about letting people down—it’s about protecting my well-being so I can show up in a way that feels sustainable. Writing scripts in advance for tough conversations can help you express your needs without feeling overwhelmed in the moment.
Grieving the Life You Used to Have
Another reality of chronic illness that people often overlook is the grief. There’s a deep sense of loss for the life I had before IIH and Long COVID. I miss the days when I could wake up and make plans without having to calculate how much energy I have or if I can handle the sensory overload of a social event. Accepting this new normal takes time, and even years into the journey, the grief can hit unexpectedly.
Coping Strategy: Focus on What You Can Control
When grief hits, it’s important to give yourself the space to feel it. But I’ve also found that focusing on what I can control helps me move forward. Maybe I can’t do everything I used to, but I can find joy in new ways. Whether it’s modifying old hobbies to suit my energy levels or discovering new passions, there’s always something I can shift my focus to. For me, finding new creative outlets that fit within my limits has been empowering. It’s okay to evolve.
Fatigue That Can’t Be Fixed by Sleep
People often assume fatigue is just feeling tired. But chronic fatigue, especially from Long COVID, is something else entirely. Even after a full night’s sleep, I can wake up feeling like I never went to bed. The energy it takes just to stay awake and function is monumental. Unfortunately, most don’t realize you can’t just “sleep it off.”
Coping Strategy: Rest Intentionally and Build Rest into Your Routine
Rest is non-negotiable when dealing with chronic fatigue, but not all rest is created equal. I’ve found that intentional, restorative rest—like listening to calming music, taking a gentle walk in nature, or using mindfulness techniques—helps me recharge more effectively than just lying in bed scrolling through social media. I build rest breaks into my daily routine to avoid pushing myself to the point of burnout. It’s all about pacing, not just in tasks but in rest too.
Thriving in a World That Doesn’t Always Understand
Living with IIH and Long COVID is a constant balancing act. From managing energy and pain to navigating the emotional ups and downs, it’s a daily battle that often goes unseen. Yet, despite these challenges, I’ve learned that it’s possible to thrive. Thriving doesn’t mean life will be easy, but it does mean finding your own rhythm and embracing the small victories along the way.
If you’re struggling to adapt to your new normal, know that it’s okay to have tough days. Give yourself grace. As someone who has walked this road with IIH and Long COVID, I can tell you that learning to live with chronic illness isn’t a one-time event—it’s an ongoing journey.
Take Charge of Your Days with the Daily Routine Guidebook for Spoonies
Finding balance in the chaos of chronic illness is tough, but it’s not impossible. If you’re looking for a way to create structure and regain some control over your days, I encourage you to download the Daily Routine Guidebook for Spoonies. It’s filled with practical tips and routines designed to help you manage your energy and adapt to life with a chronic illness, one day at a time.
Until next time,
