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Continue reading →: Why Advocacy? Why Disability? Why Autism? Why Now?
I have been challenged to see the beauty, the misogony, the advancements, the racism, the caring and abelism all within the western medicine system.
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Continue reading →: Living Well: Nurturing Disability Pride Every Day
I think the most important daily habit for me is taking my medications. Without my meds, my adhd would wreak havoc on my daily life, my heart rate would be super high and jumpy, pain would be uncontrolled, estrogen non-existent, and ultimately my functionality would be significantly reduced. Within the…
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Continue reading →: Urgent Care vs. ER: When to Seek Help
As someone with multiple chronic illnesses, where do I go when I am in a flare? Today I had to go to my local Urgent Care facility and I am so relieved I went there instead of the emergency room. I have been experiencing a POTs flare for the past…
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Continue reading →: Pale, Skinny, Frail: A Powerful Poem
The speaker grapples with the perception of their frail appearance, feeling misunderstood and labeled as pale, skinny, and unwell. Despite acknowledging the love behind these comments, they express frustration over being seen only through this diminished lens. Ultimately, they assert their inner strength and beauty beyond physical appearances.
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Continue reading →: Long-Covid and Toxic Positivity: Navigating Emotional Challenges
The author discusses the struggle to balance positivity and emotional authenticity while dealing with Long-Covid. They express frustration with the toxic positivity often encountered in society, which invalidates their feelings. Instead, they advocate for acknowledging grief and allowing space for genuine emotions, while remaining hopeful and proactive about their health.
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Continue reading →: My Grandfather’s Diamonds
Yes, I “use” diamonds every single day. Most likely in a way you would not think of right away. I use them to remember I am loved. My grandfather passed away before I was born. My Mom has always told me how much of a loving father he was and…
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Continue reading →: Navigating illness when you have Long-Covid
How everything is a risk to your health and any healing you have fought for. It is an interesting life when caring for a cracked tooth becomes an existential threat to one’s health. I am lying in bed, writing this while listening to a documentary about Yellowstone. In true ADHD…
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Continue reading →: Dysautonomia and Temperature Regulation
I have always hated cold weather. In fact, in the summer, I used to sit on concrete driveways like a lizard heating itself up on a rock. I still dislike cold weather, showers, and cold pools. I live in Hawaii and it never really goes below 60 degrees where I…
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Continue reading →: How Disability Taught Me to Protect Myself:
Nurse and disability advocate Casey-Lee Flood shares how chronic illness, Long COVID, and neurodivergence shaped her journey in self-protection and healthcare advocacy.
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Continue reading →: Disability As My Guide
My body takes center stage in every aspect of my life every day. Since 1/2024, when I got my 3rd bout of COVID-19, my being disabled has guided me in life. Overall, I felt better, not 100%, when the acute infection resolved, so I was not concerned. Yet as the…
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Continue reading →: How to Organize Your Medical Records: 5 Simple Steps for Better Healthcare Management
I want to briefly touch on healthcare equity. I know that support is scarce for many of us, on top of facing racism, sexism, ableism, and other disparities. This is part of the reason I share this blog. When you have your binder with professional notes at doctor’s appointments. It…
Hello,
I’m Casey-Lee
I have been an RN for over 14 years and have lived with chronic illness since 2019. While I have always fiercely advocated for my patients, I struggled to do the same for myself. I had to radically change how I viewed the medical system, adjust my expectations, and unlearn my tendencies toward people-pleasing.
Recognizing the challenges of self-advocacy inspired me to create this platform. The “radical” aspect is that we acknowledge the many systemic and personal factors that impact our community.
Many people experience multiple intersecting identities that create barriers to care. Such as being a person of color and disabled, a woman and disabled, or queer and disabled. Each requires unique approaches to self-advocacy.
Our resource hub will continually evolve to meet the changing needs of our community. I hope this space nourishes, empowers and provides practical tools for navigating healthcare as an advocate for yourself and others.
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