How Self-Advocacy Transformed My Life with Chronic Illness14 min read

Living with chronic illness often feels like navigating a world that wasn’t designed for you. As a woman with Idiopathic Intracranial Hypertension (IIH), migraines, chronic fatigue, and neurodiversity, I’ve spent years grappling with not just my symptoms, but also societal expectations that urged me to shrink myself, minimize my needs, and prioritize others’ comfort over my own well-being. This pressure to be small, quiet, and accommodating is especially intense for women, who are often taught from a young age to be people-pleasers and put others first.

But through my journey of managing multiple chronic conditions, I’ve discovered a powerful truth: self-advocacy isn’t just important—it’s transformative. In this post, I’ll share my story of finding my voice, claiming my space, and putting my health first. I’ll explore how learning to speak up, set boundaries, and embrace the space I occupy—both physically and metaphorically—has changed my life. And I’ll offer insights on how you can embark on your own journey of self-advocacy, no matter where you are in your chronic illness experience.

The Challenges of Living with Invisible Illnesses

When you live with invisible illnesses like IIH, migraines, and chronic fatigue, you inhabit a world of paradoxes. On the outside, you may look “fine,” while internally battling symptoms that can be debilitating and life-altering. This disconnect between appearance and reality often leads to misunderstandings, judgment, and a lack of support from others.

For me, the challenges have been multifaceted:

• Dealing with unpredictable symptoms that can flare up at any moment, disrupting plans and routines
• Navigating work environments that aren’t always understanding or accommodating of invisible disabilities
• Facing skepticism or dismissal from healthcare providers who don’t fully understand my conditions
• Managing the emotional toll of chronic pain and fatigue, including anxiety and depression
• Balancing my desire to participate fully in life with the need to rest and manage my health

As someone who occasionally uses a rollator for mobility support, I’ve also experienced the added layer of stigma and judgment that comes with visible aids. There’s often a sense that you’re “not disabled enough” if you don’t use aids all the time, or conversely, that you’re “too young” to need mobility support. These attitudes reflect a broader societal misunderstanding of chronic illness and disability, especially when it comes to young adults.

Learning to Speak Up for My Needs

One of the most significant turning points in my journey was realizing that I needed to become my own strongest advocate. This meant learning to speak up for my needs, even when it felt uncomfortable or went against my ingrained tendency to put others first. Here’s how I’ve worked this into my life:

Communicating with Loved Ones:

• Being honest about my limitations and what I need to manage my symptoms
• Educating family and friends about my conditions and how they affect me day-to-day
• Asking for specific types of support, rather than expecting others to guess what I need

Advocating in My Professional Life:

• Working only part-time (and dealing with the financial set-back)
• Found a remote job with flexible hours
• Being upfront with colleagues about my conditions and how they might impact my work
• Requesting accommodations when needed
• Pushing back against the pressure to overwork or ignore my health needs

Self-Advocacy in Healthcare Settings:

• Preparing for appointments by documenting symptoms and questions
• Pushing for necessary tests and treatments, even when met with initial resistance
• Seeking second opinions and not settling for dismissive or inadequate care
• Building a healthcare team that listens to and respects my experiences

It wasn’t easy at first. As a woman, I’d been conditioned to be accommodating, to avoid being seen as “difficult” or “demanding.” But the more I practiced asserting myself, the more empowered I felt. I realized that speaking up wasn’t just about getting my needs met—it was about honoring my worth and dignity as a person.

Setting Boundaries to Protect My Health

Another crucial aspect of self-advocacy has been learning to set and maintain boundaries. This has been especially challenging as someone who was raised to be a “people pleaser,” always putting others’ needs before my own. However, I’ve come to understand that boundaries are not just important—they’re essential for managing chronic illness and protecting my overall well-being.

Here’s how I’ve implemented boundaries in my life:

Social Obligations:

• Learning to say no to invitations or commitments when I need to rest and recharge
• Being honest about my limitations rather than pushing myself to the point of exhaustion
• Suggesting alternative ways to connect that work better with my energy levels and health needs

Self-Care Prioritization:

• Carving out time for activities that support my health, such as gentle exercise, meditation, and preparing nourishing meals
• Recognizing that self-care isn’t selfish—it’s necessary for managing my conditions and showing up fully in other areas of my life
• Setting reminders and creating routines that ensure I don’t neglect my health needs

Communication with Others:

• Clearly expressing my limits to friends, family, and colleagues
• Learning to be firm but kind when reinforcing boundaries
• Recognizing that it’s okay if others are temporarily disappointed—my health has to come first

It can be challenging to disappoint others or feel like we’re missing out on experiences. But I’ve learned that setting boundaries is an act of self-love and a necessary part of managing chronic illness. By respecting my own limits, I’m better able to show up authentically in the moments when I do engage with others.

Embracing My Space, Both Physical and Metaphorical

As someone who is neurodiverse and uses mobility aids, I’ve often felt the pressure to make myself smaller and less noticeable. Society often sends messages that people with disabilities or chronic illnesses should try to blend in, to avoid inconveniencing others or taking up “too much” space. But through my journey of self-advocacy, I’ve learned to embrace the space I occupy, both physically and metaphorically.

Here’s what this looks like in practice:

Physical Space:

• Using my rollator proudly and without apology when I need it, even if it means taking up more space in public areas
• Requesting accommodations in public spaces, such as accessible seating or extra time for tasks
• Recognizing that my body and its needs are valid, regardless of how they might inconvenience others

Metaphorical Space:

• Speaking up in conversations about health, disability, and inclusion
• Sharing my experiences with chronic illness to raise awareness and challenge misconceptions
• Advocating for broader changes in how society views and accommodates chronic illness and disability

Professional and Personal Growth:

• Pursuing my goals and ambitions, even when they require accommodations or doing things differently
• Recognizing that my perspective as someone with chronic illness is valuable and can contribute to diverse discussions and decision-making
• Mentoring and supporting others who are learning to advocate for themselves

Taking up space can be uncomfortable at first, especially when we’ve been taught to minimize ourselves. But it’s a powerful act of self-acceptance and self-love. By claiming my space, I’m not just advocating for myself—I’m helping to create a world that’s more inclusive and understanding of diverse needs and experiences.

The Ongoing Journey of Self-Advocacy

Learning to advocate for myself has been a transformative journey, but it’s important to recognize that it’s an ongoing process. There are still days when I struggle with putting my needs first or speaking up for myself. Self-doubt can creep in, and old habits of people-pleasing can resurface. But I’ve learned that self-advocacy is a muscle that gets stronger with practice—and that every small act of assertiveness is a step towards reclaiming my power.

Here are some key lessons I’ve learned along the way:

• Start small: Self-advocacy doesn’t have to mean making big, dramatic statements. It can start with small acts, like asking for a break when you need one or expressing a preference.
• Practice self-compassion: Be gentle with yourself as you learn and grow. It’s okay to make mistakes or have setbacks.
• Celebrate victories: Acknowledge and celebrate the moments when you successfully advocate for yourself, no matter how small they might seem.
• Seek support: Surround yourself with people who understand and support your journey. This might include joining support groups or working with a therapist who specializes in chronic illness.
• Keep learning: Stay informed about your conditions and your rights. Knowledge is power when it comes to self-advocacy.

If you’re on your own journey of self-advocacy, remember that you’re not alone. It’s okay to start small, to stumble, and to ask for help along the way. Every step you take towards advocating for yourself is a victory.

You deserve to take up space. You deserve to have your needs met. You deserve to find your roar and claim your power. Keep advocating for yourself, one day at a time.

And if you need a little extra support and encouragement, I’ve created a set of free chronic illness affirmations to help remind you of your strength and resilience. Download them today by filling out the form below, and use them as a daily reminder of your worth and your right to advocate for yourself.

Until next time,