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When I was first diagnosed with Idiopathic Intracranial Hypertension (IIH) in 2018, I felt completely overwhelmed. The idea of managing a chronic illness—let alone my life—seemed impossible. I was ready to hand over the reins to my neurologist, trusting they’d guide me through every decision. Chronic illness self-management? That didn’t even cross my mind.
After some deliberation, I decided to try medication to manage my condition, despite the risk of side effects. I’m not typically a fan of heavy-duty pharmaceuticals—I believe they’re necessary for some but have rarely worked well for me. Still, the possibility of easing my symptoms and reclaiming some normalcy felt worth the gamble.
Unfortunately, my body disagreed. Just a month into treatment, severe side effects made the medication unsustainable. My appetite vanished, and I couldn’t keep food down. My neurologist offered little in the way of alternative solutions, and I found myself at a crossroads.
That’s when I realized I needed to take matters into my own hands. Chronic illness wasn’t something I could simply outsource. I had to learn how to manage my IIH in a way that worked for me, on my terms. And so began my journey into self-management—a path that ultimately empowered me to live a more balanced and fulfilling life.
In this post, I’ll share the basics of chronic illness self-management, why it’s so crucial, and how you can start building your own self-management toolkit today.
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.
What is chronic illness self-management?
Self-management is all about taking an active role in your care. According to the Multiple Chronic Conditions Resource Center, it’s “the ability of the patient to deal with all that a chronic illness entails, including symptoms, treatment, physical and social consequences, and lifestyle changes.”
For me, this definition only scratches the surface. Chronic illness self-management also involves tending to the emotional and spiritual toll chronic conditions can take. It’s about finding ways to support yourself holistically—not just physically.
Self-management isn’t about going it alone or replacing professional care. Instead, it’s about partnering with your healthcare team while stepping into your own power. When we take an active role in managing our conditions, we reclaim a sense of control and agency in lives often dictated by the unpredictability of chronic illness.
For example, instead of feeling like symptoms are happening to us, self-management allows us to frame our experiences differently. We might not have control over every aspect of our condition, but we can control how we respond and what tools we use to support ourselves. This shift in mindset can make a world of difference in how we approach daily challenges.
The Risks of Leaving Chronic Illness Unmanaged
When chronic illness goes unmanaged, it doesn’t just impact physical health. It can seep into every area of life. Persistent pain and untreated symptoms can lead to mental health challenges like depression and anxiety. Relationships, work, social life, and even basic self-care can become harder to maintain.
You might find yourself withdrawing from friends and family or feeling frustrated because others don’t understand your limitations. Unmanaged illness can lead to feelings of isolation, resentment, or even guilt for not meeting others’ expectations. This emotional strain often compounds the physical challenges, creating a cycle that can feel impossible to break.
On a practical level, unmanaged symptoms can make it difficult to stay employed, maintain financial stability, or care for your home. Sleep disturbances, changes in appetite, and a loss of purpose or self-worth can all become part of the picture.
The good news is that chronic illness self-management offers tools to interrupt this cycle. By focusing on what we can do—no matter how small—it becomes possible to regain a sense of purpose and balance, even in the face of ongoing challenges.
Benefits of Chronic Illness Self-Management
Self-management isn’t a one-size-fits-all solution, but it does come with universal benefits:
- Improved Quality of Life: Managing your symptoms can help you feel better physically and emotionally, allowing you to participate more fully in the activities you enjoy.
- Increased Independence: Even when you need help, knowing what you need and asking for it is empowering. This can strengthen your sense of self-sufficiency.
- Active Participation in Care: You become a partner in your treatment, not just a passive recipient. This can lead to better communication with healthcare providers and more tailored treatment plans.
- Self-Compassion: Managing your illness can nurture self-love and acceptance, reminding you that you’re doing the best you can under challenging circumstances.
- Personal Growth: You learn more about your body, your needs, and what works for you. This knowledge can lead to a deeper understanding of yourself and a greater sense of resilience.
Self-management also encourages flexibility. For instance, you might develop strategies for flare days, like adjusting your routine or leaning on your support system, while still celebrating the small victories on good days.
How I Use Self-Management to Thrive with Chronic Illness
Over the years, I’ve developed my own self-management practices. Here are a few things that work for me:
- Using a Personalized Pain Scale: I created my own system to gauge when I can push through and when I need to rest. This helps me make informed decisions about my day instead of overcommitting or ignoring my body’s signals.
- Adding Accessibility Tools: Simple changes, like a shower stool or an adjustable bed paired with wedge pillows, make my daily life more manageable. These tools reduce strain on my body and help me get the rest I need.
- Simplifying Meal Prep: Pre-cut veggies are a lifesaver on low-energy days, giving me options without overexertion. Cooking is something I love, so finding ways to make it easier lets me keep doing what I enjoy.
- Prioritizing Rest: I schedule downtime to recharge, especially after busy days or activities. Pre-planning rest time ensures I don’t push myself to the point of burnout.
- Building Community: Connecting with other spoonies reminds me I’m not alone in this journey. Sharing tips and experiences with others who understand can be incredibly validating.
Each of these tools helps me feel more in control, even on days when my symptoms are at their worst.
Ideas for Starting Your Own Chronic Illness Self-Management Plan
Not sure where to begin? Here are some tips to help you start building your own self-management toolkit:
- Educate Yourself: Understanding the science behind your condition can demystify what’s happening in your body and mind. For example, learning about the pain cycle can help you identify ways to break it.
- Track Symptoms: Keeping a journal of your pain, fatigue, and other symptoms can reveal patterns and help you identify triggers. Use this information to make informed decisions about your care.
- Plan for Flare Days: Create a “flare-day” kit with items and strategies that bring comfort and relief when symptoms spike. This might include heat packs, entertainment, or easy-to-prepare meals.
- Care for Your Mental Health: Tools like journaling, mindfulness, or emotional support from a therapist can make a big difference. Don’t forget to acknowledge and process your emotions—they’re a valid part of the journey.
- Celebrate Wins: No matter how small, recognizing your efforts and progress can boost your confidence and resilience. Whether it’s cooking a meal or resting when you need to, every step counts.
Remember, self-management is a personal journey. What works for one person may not work for another, so give yourself permission to experiment and adapt.
Ready to Empower Yourself with Self-Management?
If you’re feeling inspired to take your first steps into chronic illness self-management but aren’t sure where to start, I’ve got something just for you.
The Energy Management Toolkit is designed to help you assess your energy drains, track your energy levels, and identify patterns that affect your well-being. It’s a practical first step toward managing your chronic illness in a way that feels empowering and achievable.
Just fill out the form below to snag your FREE copy today!
You’ve got this, spoonie! Here’s to taking back control, one step at a time.
Until next time,
