Kenitra W. Dominguez is the author of the new book Because I Deserve It: What Chronic Illness Taught Me about Finding My Voice in the Healthcare System. She is the founder of Bay Equity HR, a consulting practice.
Q: What inspired you to write Because I Deserve It, and how was the book’s title chosen?
A: In 2021, I was diagnosed with idiopathic intracranial hypertension, or IIH, a rare neurological condition that causes pressure to build around the brain and optic nerves. Left untreated, it can cause permanent vision loss. I had been living with severe headaches for years and had seen neurologists and other specialists, but I still did not have an answer.
Then I went in for what I thought would be a routine eye exam. My optometrist saw swelling around my optic nerve, and I ended up in the emergency room that night. The book begins at my diagnosis.
The first few months after my diagnosis were difficult. I did not know which specialists I needed, how to get a prior authorization, or how to ask for the care I needed. There was no map.
I also kept hearing similar stories from other women, especially Black women and other women of color, who had been dismissed, told to wait, or told their symptoms were caused by stress. That dismissal is not just frustrating, but it delays diagnosis and treatment. The harm that follows is often preventable.
I am not a physician or a health policy expert. What I have is a patient's view of the system, and I wanted to build the thing nobody handed me. Not a book you read once, but something you can come back to at different points, written for people who are short on time and energy to figure out a system alone.
The title came late. I have never been good at titles, so nothing felt right while I was writing. After I finished the manuscript, I went through the Notes app on my iPhone and found an old note called "Because I Deserve It." I had written it as a content idea and forgotten about it.
When I saw it again, I knew it was the belief I wanted running underneath every chapter. All of us deserve to be heard and cared for. Why do you deserve the best care? Because you are a human being and you are worthy of it. I wanted a reader to meet that idea on the cover and keep meeting it all the way through.
The subtitle is longer, but I wanted it to name what I found during that experience, which was my voice.
Q: The Foreword Review called it “an empowering self-help guide to dealing with a chronic condition as a Black woman.” What do you think of that description?
A: I appreciated that the reviewer called it a guide because that is what I intended it to be. My story is there, but I am using what happened to me to share practical things people can do to advocate for themselves.
I also appreciated that the review named my experience as a Black woman instead of writing around it. I was intentional about writing primarily for Black women and other women of color.
Being a Black woman shaped my experience in the healthcare system and what happened to me in those rooms. It was important to me that the reviewer did not treat that part of my identity as a footnote.
The book is not only for Black women. Anyone living with a chronic condition, or caring for someone who is, can use it.
Q: What do you think the book says about the importance of advocacy?
A: I think the book shows that advocacy can help you take back some of the control a chronic condition takes from you. I cannot always control how my body feels on a particular day, but I can control how prepared I am when I walk into an appointment.
Advocacy starts before you enter the exam room. You usually have limited time with your provider, and preparation helps you say what you need to say without trying to remember everything in the moment.
It also helps to notice what you already bring with you. You have lived in your body your entire life, which makes you the expert on it. A physician may be able to diagnose or name a condition, but they do not know what it feels like to live in your body every day.
Self-advocacy is not about forcing your body to do more than it can. It is about trusting yourself and using the tools you already have. What became clear to me during my own care is how much it matters to speak up, and to keep speaking up until you are believed. Advocacy changes outcomes. It can also save lives.
Q: What impact did it have on you to write the book, and what do you hope readers take away from it?
A: I wrote the book while I was still learning how to manage my condition, so it took much longer than I expected. Some weeks I was excited to work on it. Other weeks I dreaded opening the file. My biggest fear was that it would not be useful to anyone.
Writing it taught me to stop over-editing. Some things are messy, and that should be enough.
It also pushed me forward in a way I did not expect. I am an introvert, and self-promotion is not something that comes naturally to me. Writing this book forced me to do it anyway, and I have gotten more comfortable being uncomfortable.
My background gave me access to things most patients are never taught. It felt wrong to keep that to myself, so I combined what I already knew with what I learned as a patient and tried to make it easier for someone else to use.
For people managing chronic conditions, I hope the book helps them feel heard, less alone, and better prepared to advocate for themselves. My greatest wish is that it encourages people to take action and get involved in their healthcare. No one is ever going to care more than you do.
For the people around them, I hope it provides a better understanding of the weight someone may be carrying when they enter an exam room or show up for work.
The responses that have meant the most to me are from readers who saw their own grief in mine, or who felt like my story was their story. Knowing that people are connecting with it has eased many of the fears I had while writing.
Q: What are you working on now?
A: Speaking and workshops are my main focus right now. I want to take the ideas in the book into the places where patients receive care and where people with chronic illnesses are expected to work, function, and ask for support.
One part of that work is patient advocacy. My signature talk, Heard: How to Make the Healthcare System Listen, gives patients practical ways to prepare for appointments, speak with more authority, and respond when they feel dismissed.
I am also developing workplace training for HR teams, People Ops professionals, managers, and organizational leaders. I have a background in HR and a master's in work law, so I understand both the employee experience and the systems employers are responsible for managing.
The training goes beyond meeting the minimum requirements for workplace accommodations. It looks at what real support can mean for someone managing an illness or disability while trying to remain employed.
I want to work directly with clinicians, care teams, medical schools, and nursing schools. One of my talks, What Your Patient Stopped Telling You, focuses on what can happen when patients repeatedly feel dismissed or unheard.
I am currently booking talks and workshops, and organizations can reach me through my website.
Q: Anything else we should know?
A: Because I Deserve It was published on July 7 and is available on Amazon (https://www.amazon.com/dp/B0GX3131XK) and Bookshop.org (https://bookshop.org/p/books/because-i-deserve-it-what-chronic-illness-taught-me-about-finding-my-voice-in-the-healthcare-system-kenitra-w-dominguez/9113e9aa24b82057?ean=9781963678253). Independent bookstores can order it through IngramSpark.
More about the book and my speaking and workshops is at kenitradominguez.com, and organizations can reach me through the contact form there. I am on Instagram at @keniwdominguez and on LinkedIn.
I also write a Substack called Low Pressure Living, published every other week, about building a full life without pushing past what your body can carry.
--Interview with Deborah Kalb
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