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Imagine waking up already exhausted, knowing today’s energy will be spent fighting for basic needs—convincing a doctor to take your symptoms seriously, advocating for accommodations at work, or simply navigating a world that wasn’t designed with accessibility in mind.
If it feels like self-advocacy is harder than it should be, you’re not imagining it. The reality is that self-advocacy for chronic illness is a necessity, yet it often feels like an uphill battle. The policies, biases, and systemic barriers around us shape how easily we can access healthcare, employment, and even public spaces.
So, how can we push back without depleting ourselves? Let’s break it down.
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.
How to Advocate for Yourself Without Burning Out
Advocating for basic needs should not be this hard. Yet, the system isn’t designed to make self-advocacy for chronic illness easy. While the fight is necessary, so is protecting your energy.
Energy-Saving Self-Advocacy Strategies
- Choose your battles wisely. Not every fight is worth draining your limited energy. Focus on the ones that will have the biggest impact on your quality of life.
- Use scripts and templates. Instead of spending precious energy crafting the perfect email, use ready-made templates for accommodation requests, appeal letters, and advocacy emails.
- Lean on support networks. You don’t have to do this alone. Whether it’s a disability rights organization, a support group, or trusted friends, let others help advocate when possible.
The Backlash Against DEIA is Making Self-Advocacy for Chronic Illness Even Harder
If you’ve noticed workplaces rolling back flexible work, fewer discussions on accessibility, or less emphasis on inclusion, you’re not alone. The growing backlash against Diversity, Equity, Inclusion, and Accessibility (DEIA) efforts is disproportionately affecting disabled and chronically ill individuals.
How DEIA Rollbacks Affect Self-Advocacy
- Workplaces become less accommodating. Companies feel less pressure to provide disability accommodations when DEIA efforts are deprioritized.
- Healthcare disparities worsen. Without DEIA initiatives, research and treatment gaps for chronic illnesses may widen.
- Accessibility is deprioritized. When organizations move away from DEIA, accessibility often becomes an afterthought rather than a standard.
Self-Advocacy Tip: If your workplace is rolling back inclusion efforts, document everything. Keep records of accommodation requests, policies, and correspondence in case you need to advocate for yourself later.
Why Simply Existing as a Spoonie is Political
Many of us have been told, “Why do you have to make everything political?” But the truth is, we didn’t choose for our lives to be political—society made them that way.
How Policies Impact Self-Advocacy for Chronic Illness
Political decisions affect nearly every aspect of our daily lives:
- Healthcare access: Can we afford our medications? That depends on insurance policies and laws.
- Workplace accommodations: Can we work from home or get reasonable adjustments? That’s decided by disability rights and employer policies.
- Public accessibility: Can we navigate stores, restaurants, and transit safely? That depends on whether accessibility is prioritized in urban planning.
When we ask for better healthcare, workplace flexibility, or disability inclusion, we’re not being difficult—we’re fighting for the right to live with dignity.
Self-Advocacy Tip: When someone dismisses your needs as “political,” reframe it: “This isn’t about politics—it’s about basic human rights.”
Why Keeping a Routine is an Act of Resistance
in Self-Advocacy for Chronic Illness
When self-advocacy for chronic illness feels overwhelming, maintaining even the smallest routines can be an act of resistance. In a world that makes accessibility difficult, structuring your days around what works best for you is a way to reclaim control.
The Power of a Routine
- Reduces unpredictability. When external factors feel chaotic, a routine gives stability.
- Conserves energy. Knowing what to expect each day reduces mental and physical exhaustion.
- Prevents burnout. A well-structured routine ensures you have energy for advocacy when needed.
Free Resource: Daily Routine Guidebook for Spoonies – Learn how to create a flexible routine that aligns with your energy levels.
How to Set Boundaries and Say No
to Energy-Draining Situations
Self-advocacy for chronic illness doesn’t just happen in medical offices or workplaces—it also happens in personal relationships. Setting boundaries is a crucial part of protecting your energy.
Common Boundary-Setting Challenges
- Feeling guilty for saying no. You are not obligated to overextend yourself for others at the expense of your health.
- Dealing with pushback. Some people won’t understand your boundaries. That doesn’t mean you should abandon them.
- Managing internalized ableism. Society teaches us that we need to “push through.” Remind yourself that rest is a necessity, not a weakness.
Self-Advocacy Tip: When setting a boundary, be firm but clear: “I appreciate the invitation, but I don’t have the energy for that right now. Let’s plan something lower-energy soon.”
Finding Strength in Community Advocacy
Advocacy is easier when we’re not doing it alone. Community-driven efforts often create meaningful change faster than individual efforts.
Ways to Engage in Community Advocacy
- Join online or local advocacy groups. Connect with others who share your experiences and concerns.
- Share your story. Whether through social media, blogs, or support groups, speaking about your experiences can help others feel less alone.
- Support legislation that benefits disabled and chronically ill people. Calling representatives, signing petitions, and voting all play a role in shaping accessibility policies.
Self-Advocacy Tip: Change happens when we amplify each other’s voices. Even small efforts, like sharing information or signing a petition, make a difference.
Advocacy is Hard—But You’re Not Alone
If you’re feeling exhausted from constantly having to fight for yourself, that’s valid. Self-advocacy for chronic illness should not be this difficult, yet here we are. The good news? You don’t have to do this alone.
Whether it’s pushing for more inclusive workplaces, advocating for better healthcare, or simply reclaiming control over your day-to-day life, your efforts matter.
Remember: You shouldn’t have to fight this hard for basic access—but since the world isn’t built for us yet, self-advocacy is how we push back. Use your energy wisely, lean on tools that help, and remember: just existing as a spoonie is already an act of resistance
Protect Your Energy While Advocating for Yourself
Advocacy is necessary, but so is self-preservation. If you’re struggling to balance self-advocacy with your own well-being, the Energy Management Toolkit can help. Learn how to track your energy, prioritize what matters, and make self-advocacy sustainable.
Download the Energy Management Toolkit via the form below this post today and start advocating without burning out.
Until next time,
