Living With Long COVID: An Interview With Lynn Julian Crisci
Many of the Patient Leaders and health advocates that we work with at SocialHealthNetwork.com have been affected by Long COVID in one way or another. Whether they know someone with Long COVID, love someone with Long COVID, or have experience with it themselves.
According to the Centers for Disease Control, those experiencing health inequities such as disability are at greater risk of developing Long COVID. 1 Long COVID is still greatly misunderstood, and while there are currently studies being done, there is much more to learn about prevention, treatment, and management.
We recently had the chance to talk with Lynn Julian Crisci, who advocates for many conditions, including Long COVID. She shares her story below. If you'd like to follow Lynn's work, scroll to the bottom of this article to find links to all of her socials!
SocialHealthNetwork.com: Could you tell me a little bit about yourself and your journey with health advocacy?
Lynn Julian Crisci: I wear many hats! I'm an injured survivor of the Boston Marathon bombing, and a patient advocate for traumatic brain injury, hearing loss, and PTSD. I live with many rare diseases and chronic conditions, which have lead me to volunteering as an Advisory Board Member and Team Leader for many international organizations including the American Heart Association, American Migraine Foundation, Center for Lyme Action, and many, many more. I'm also an actress, singer, activist, and ambassador.
I live in Boston with my medical alert service dog. Anyone who wants to follow me can find me on Instagram @Lynnjulian007 and @DrSmallzMD.
SHN.com: When were you diagnosed with Long COVID?
LJC: In the end of December, 2021, despite being fully vaccinated, and wearing a mask whenever I was in public, I became infected with COVID-19, and my infection very quickly became severe. Although I was too afraid to go to the hospital, because it was full of infected people, with flu, RSV, and other strains of COVID, I was struggling to breathe, and my heart and blood pressure were dysregulated, due to severe dysautonomia.
What has it been like to live with a condition that still has so much unknown about it?
When the worst of it finally passed, which took several months, I truly thought I was going to feel better, and get back to my baseline health again. But, instead, I was labeled a “COVID Long-Hauler,” and prescribed a handful of new medications...Seemingly for life!
I was already disabled, living with multiple chronic conditions and rare diseases. Now, on top of that, I had to learn to live with the following new, chronic medical problems: severe dysautonomia/sudden falling, blood pressure issues, rapid heartbeat/chest pain/dizziness, COVID headaches, blurred vision, air hunger aka breathlessness, slow motility/constipation/diarrhea/poor digestion/nutritional deficiency, poor circulation, severe chronic fatigue, exercise intolerance, chronic anxiety, tinnitus, and irritability.
So many in the Long COVID community feel forgotten about as lockdowns ended and widespread masking has become rare-how do you feel about it all?
In Boston, where I have lived for the past 15 years, we are still considered a “high-risk“ area for flu, RSV and Long COVID, as of 2025. Yet, I see almost no one wearing masks in my city. Major hospitals just reinstated a mask mandate for their doctors. But, despite this, very few patients are choosing to wear one. In fact, “masking” has become so politicized that I endure disrespectful eye rolls, and other forms of negative attention, from strangers, simply because I pass by them wearing a mask.
What treatments have you tried?
As of 2025, and I've tried over a dozen different Long COVID treatments, most paid for out of pocket. I do a different type of detox every single day because I am on so many medications and supplements (glutathione, modified citrus pectin, oral and topical magnesium; probiotics; omega 3-6 oil; turmeric) that my liver struggles to filter them all: infrared light therapy, infrared saunas, Epsom salt baths, coffee enemas, TENS (transcutaneous electrical nerve stimulation), VNS (vagus nerve stimulation), TMS (transcranial magnetic stimulation), tDCS (transcranial direct current stimulation).
I've restricted my diet (no dairy, gluten-free, low FOD map), done HBOT hyperbaric oxygen therapy, followed various herbal protocols, and taken two doses of ivermectin. With each treatment, I would feel better at first, and then flare up again.
What do you think people in the Long COVID advocacy community are fighting hardest for, and how can we support them? What organizations exist for those who need support?
Americans living with Long COVID aka “Long-Haulers” desperately need government grants, to fund COVID research, to discover the cause of and treatments for all the chronic health problems resulting from Long COVID. Too many of us have lost our jobs, friends and relationships, as we became disabled by so many bodily dysfunctions all at once. Having all of our organs malfunctioning, at the same time, is more than we should have to learn to live with on top of that.
You can support my mission by connecting with me on social media, as this influences their algorithm to assure my depth of medical knowledge reaches more of those in need. Another way to help reach a larger audience, to create awareness, is to hire me as a Featured Speaker on “The Secret To Resilience.” I have found resilience to be crucial to living with chronic conditions.
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