My Journey With Long COVID, and My New Allies
Sharing my Story with Dr Jean Storm
The latest episode of Long Covid, MD is a podcast share. Hear my story of developing long COVID, and the direction I think healthcare needs to go to effectively care for long COVID patients. I was interviewed by Dr Jean Storm, on her aptly named show Taking Healthcare By Storm, which is targeted to medical professionals interested in improving our system.
And that’s what I want you to know. Physicians, nurses, physical therapists - any and all healthcare providers - recognize that our system is not enough. They - actually, we - are sounding alarms, organizing, and collaborating with government agencies; we’re pushing hospital systems to prioritize high-quality and accessible patient care. A silver lining of experiencing long COVID for me* has been connecting with colleagues like Dr Storm who are at the forefront of this work. Dr Storm was a physician for nursing homes at the height of the pandemic, protecting an already-vulnerable patient population. Sadly, she witnessed tragedy after tragedy. Now she’s working to fix the systemic issues that makes long-term care residents so vulnerable. She recently shared her story on Long Covid, MD.
*(Nobody is required to find a silver lining in a time of hardship, and it’s not your job to find a reason to be ‘grateful’ for your suffering.)
With Dr Storm I felt comfortable sharing my story and my opinions in a way I haven’t before. I think that speaks to feeling safe with her, and feeling kinship. I also got lucky. If you have long COVID, you know some days your mind is clear and others it’s murky. That day I felt sharp, safe, and ready.
Talking with physicians don’t always feel safe. In fact, the patient experience is typically marked by fear and danger. I want to highlight a few doctors whose voices you will soon hear on Long Covid, MD. They care about patients and are actively trying to make medicine better. I’ll also share what I’m doing beyond the podcast, to empower clinicians on long COVID.
Change-Makers
Dr Burgart is a medical bioethicist and the absolute best kind of doctor: an anesthesiologist! She specializes in the care of children, particularly the very smallest who need organ transplantation. Through her work here on Substack and beyond, Dr Burgart invites medical professionals to recognize the flaws within healthcare, including their own trauma. Read her Substack platforms called “Poppies and Propofol” and “The Moral Injury Clinic”. And keep an eye out for our upcoming podcast interview! We discuss ways healthism, the idea that our health is our own responsibility, impacts the national discussion of long COVID.
If Dr Zha has an opinion on the medical profession, you’ll know, and much of the time the opinion is "Be Better!” A skilled storyteller, Dr Zha focuses on improving the clinician-patient experience, and improving communication within healthcare specialties. Her protective nature almost certainly is influenced by her own family’s story of vulnerability, strength and risk-taking, which she also shares on her Substack “Ask the Patient”. You’ll hear Dr Zha’s voice soon on Long Covid, MD. We discuss ways medical culture is flawed and how it can improve to better serve patients.
You won’t find Dr Aboelata on Substack, because she is on the ground and everywhere else. Founder of Roots Community Health in Oakland, Dr Aboelata became a daily source of COVID updates in 2020, a public health service she created when the county public health department wasn’t able to (wasn’t willing to?) meet needs. She continues to publish The People’s Health Briefing, sharing vital public health information on COVID and other infectious diseases, food contamination and more. She translates often confusing (and increasingly hidden) public health information to empower her community. Dr Aboelata founded Roots in 2008, a health system that addresses urgent medical needs and, unlike most hospitals, also addresses systemic determinants of health: employment, shelter, safety. Roots not only has clinics, but outreach providers caring for patients where they live. It’s also home to Clean360, a soap-making enterprise employing community members. Dr Aboelata joined me recently to discuss the limitations of our healthcare systems, and what we can learn from the unique structure of Roots Community Health. We can build a better system. I’m excited to share that episode soon.
Zeest Khan
As for me, I continue to podcast and write, and I’m doing more.
I serve on the patient advisory committee for CURE-ID, an FDA collaboration with CDC and NCATS, the National Center for Advancing Translational Science. In the face of drastic funding cuts to public health, I urge you to share your treatment experience on CUREID as an act of resistance. It may help identify effective treatments for our condition, as it has for rare infections like Balamuthia. If you haven’t read Michael Lewis’ piece on CUREID founder Heather Stone yet, now is the time.
I was invited to join the RECOVER-TLC Device Prioritization Working Group, an NIH initiative aimed at identifying medical devices for long COVID that we can further fund and study.
I’m presenting to larger and larger platforms of medical professionals through Project ECHO, a federally funded medical education initiative. I share my experience with long COVID and offer ways clinicians can directly and immediately provide care for long COVID patients. I presented several times for American groups and am speaking to a global audience next week. Wish me luck!
In all of these groups, I am collaborating with remarkable people, from medical professionals, to individuals with lived experience, and scientists in the federal government and private sector who are committed to the long COVID community.
These are challenging times, and in fact historic times. It can be easy to feel overwhelmed and disoriented. I certainly have. So I’m grounding myself by joining hands with others who are like-minded, and sharing my knowledge as best I can.
Share this platform with someone who might benefit, either by finding support or by learning something new. Listen to my interview with Dr Stone to hear my full story with long COVID, on your favorite podcast app or here on Substack. I imagine you’ll hear similarities to your own experience.
Stay hopeful. Bye for now.
Thank you for sharing your own experiences with long COVID. It helps other non-medical folks to feel heard in a sometimes tone-deaf health care system.