AJ: Tell us about yourself?
IJ: I’m an author, patient and patient advocacy strategist. I was diagnosed with primary immune deficiency disease at 19, after struggling with why I had so many infections that wouldn’t fully go away. Though it was great to finally have a diagnosis, I still wasn’t able to access treatment and wouldn’t find a doctor who fully understood my rare disease until my 30’s. I went a full three decades of my life living with constant and severe infections. I believe this is what finally triggered my dysautonomia—which initially started off as dizziness, fainting and tachycardia.
Dysautonomia is the dysfunction of the autonomic nervous system which can impact multiple organ systems. It comes in many forms including POTS (postural orthostatic tachycardia syndrome) and gastroparesis (the partial paralysis of the digestion track). It can affect sleep and cognitive function, causing brain fog.
I developed gastroparesis and struggled to keep a healthy, nourishing diet. Thankfully, I worked with my cardiologist and got on beta blockers to treat my heart issues. Now I have weekly IV fluids which help with my gastroparesis and other dysautonomia symptoms. I am also in treatment for my primary disease, which requires a weekly sub-cutaneous infusion of immunoglobulins.
AJ: How has living with these chronic illnesses affected how you travel, to far off places or simply to your local grocery store?
IJ: Traveling is definitely a struggle. But it is possible. I have to always be prepared to deal with the things I can’t control. I carry extra medications and fluids to stay hydrated. I avoid large crowds and places like waterparks and public pools to reduce my chance of infection. I don’t visit people who are unwell since I’m immunocompromised. This was really a struggle during the pandemic.
When traveling by plane, I pack for all scenarios that my disease might cause. I use the airline’s ADA services, like wheelchair support to reduce fatigue from walking and carrying bags. I’m allowed to take one carry-on item besides the one I paid for, to hold all my medical supplies and during COVID. I sometimes request a compassion seat, which puts an empty seat between me and the next person, to ensure space to stay germ-free.
AJ: How can the travel and tourism industry, and venues, better assist those living with chronic illnesses?
IJ: All my conditions are invisible ones, and though I feel comfortable using all the disability support services—many patients don’t. They fear they’ll be judged, or shamed for using these offerings. I would like to see more awareness campaigns aimed at those with invisible illnesses that would help them feel more confidant in utilizing these services.
AJ: Your work as a patient advocate is inspiring. How did you become an advocate? What advice do you have for others who want to become advocates?
IJ: I often call myself an accidental advocate, which, I suppose, most advocates are. Advocates exist to break a cycle or prevent harm to others that was done to them. I started advocating in the early 2010’s with a blog about my daily life with an invisible illness. I wanted friends and family to get to know this part of my life, which I had been ashamed of for a long time. I wanted them to understand that there was still me but also a disability that occupied a lot of my mental energy, strength and time. I found that a lot of other patients were looking for stories like mine, of living openly and candidly with a chronic illness and sharing how it touched everything in my world—relationships, friendships, work, school, money and considerations about my future. I later started writing books to reach a broader audience offline but continued my efforts on social media.
My advice for others is to understand that advocacy takes many forms. As a writer and publicist, content creation seemed like a natural path to share my story and utilize my skills. Others could impact policy change and legislation, create support groups and moderate them, create art, start non-profits or for-profit companies that provide services or products that are missing for those with an illness. There is no degree, no certification, and no firm rule on how to become an advocate. Speak and share your story and you will find your next steps from there.
AJ: Congratulations on the publication of your book, Surviving and Thriving Chronic Illness. How did you come to write it and why?
IJ: Surviving and Thriving is my first book and it was released in 2018. It’s a great beginners guide for young adults or newly diagnosed adults on how to survive daily life with a chronic illness. It offers tips on dating, relationships, sex, school and work with an active disease that often makes you unreliable. I wanted to write this book because it was what I needed when I was transitioning into adulthood with a chronic illness. There were very few resources to help me understand how to cope with new adulthood and the responsibility of my disease.
My newest book, Medical Gaslighting: How to Recognize It, Prevent It, and Fight For Your Life, is coming out in fall 2024 with BenBella Books. This is a survival guide for women dealing with doctors who dismiss, ignore or even shame them for their health concerns. It teaches actionable skills to help you better support your case for quality of life when discussing treatments and diagnostics with your doctor.
AJ: What moments or achievements stand out for you in your work?
IJ: I always knew I’d write a book someday, but I’m surprised at what the topic ended up being! I’m so proud of my books and am always moved to hear feedback from readers who say they helped guide their journeys. Both of my publishing deals were really significant for me personally. I had been struggling to respond to every single patient that reached out so being able to offer widespread, in-depth information for patients was a relief for me.
I was recently on the Dr. Phil show as an expert in medical gaslighting in late 2022. I’d done a few television interviews, but this was my first national one on cable and I had a great time. I’ve worked with amazing advocates in my field on webinars and panels. The network I’ve built is significant for me—people who are living parallel lives to mine, dealing with the same challenges of being chronically ill while pursuing a career that can be part of the systemic changes we’re fighting for in healthcare.
AJ: What message would you like to share about the importance of advocating for patient rights?
IJ: Patients can shape the culture of healthcare. If you are submissive or not engaged, that is what your providers will expect. They won’t feel the need to explain their reasoning, and they will find the few patients who do ask questions and get involved in their care to be impertinent or bothersome. If you don’t write reviews for your doctors and report doctors who are harming you, they will continue to harm others and get away with poor treatment. We need to hold the system accountable for anti-patient practices. We do have rights, so knowing, using and protecting them has to be a conscious practice.
I know that my story has been a guide for patients who feel hopeless or stuck. Every time we tell our stories, we help people like us get unstuck from the helplessness of chronic illness.
AJ: What can we expect to see from you in the next year?
IJ: I’m still collecting narratives for my next book from patients who have experienced medical gaslighting and racial bias in healthcare. Patients with stories to share can send them to Iwasnotheard@gmail.com. I’ll be doing more speaking engagements and interviews as we ramp up for the release of the book next year.
Find Illana at IlanaJacqueline.com or @Ilana_jacqueline on Instagram and TikTok.