There are many Long Covid related bloggers and influencers who provide hope about living a good life with this illness. I’ve provided links to some of the best below. I hope this helps you find inspiration, find companionship and know that you are not aone.
You can also read my personal story on this blog.
Physics Girl: Dianna Cowern – Youtube star
Dianna Cowern, with the Long Covid related pseudonym Dianna Haze, tweets on X/Twitter about her Long Covid journey. Dianna was initially very severely ill. She was stuck in a dark room 24/7, was unable to properly wash and only had handful of safe foods.
After receiving a Stellate Ganglion Block, Dianna noticed a remarkeable improvement in her symptoms. Her body was much better able to tolerate medicines and supplements. As a result, Dianna has been able to tweet much more frequently.
She shares both day to day tidbits, medical updates and sometimes amplifies important Long Covid related campaigns.
Dianna is currently collaborating with Dr David Putrino who is the Director of Rehabilitation Innovation for the Mount Sinai Health System in New York. They are working together on collating existing research on the Stellate Ganglion Block. This may lead to a future clinical trial.
Whitney Dafoe – son of prominent ME/CFS researcher Dr Ron Davis
Whitney Dafoe gives an unfiltered and unflinching look into the struggles of a severely ill ME/CFS patient. Around half of Long Covid patients develop ME/CFS according to an paper in the Journal of Infection. ME/CFS is an illness with the hallmark being Post Exertional Malaise. Post Exertional Malaise is the inability of the body to recover from even minimal activity resulting in profound fatigue and other symptoms.
Dr Ron Davis is a Professor of Biochemistry & Genetics at Stanford University. He continues to conduct ground breaking research into ME/CFS including trialling new treatments on his son Whitney. Whitney’s illness is a huge motivator for Dr Davis to continue his research. In turn, Whitney uses his platform to fundraise for Dr Davis’ research.
Whitney blogs about his experiences frequently. Whitney recently achieved great progress but being able to eat normal food after having survived on supplemental nutrition for many years.
He provides us with emotive stories about his experiences. For example he states his energy envelope is reduced by around 99.7% compared to the average person.
Matt McGorry – actor
Matt McGorry has his breakout role as corrections officer John Bennett in Orange is the New Black in 2013. Since then he has also appeared in How to Get Away with Murder. Matt has had to significantly reduce his amount of acting since contracting Long Covid.
Matt McGorry posts on X/Twitter where he advocates for social justice of all kinds. For example he advocates for the rights of LGBQITA+, BIPOC and other persecuted groups. He is particularly vocal on disability justice. For example, Matt has put out videos encouraging people to wear masks so that people with a disability can safely access pulic spaces without risking catching a respiratory disease such as Covid.
Gez Medinger – Youtube vlogger
Gez Medinger has become well known in the Long Covid community for his profilic vlogging with up to one million views. He is probably up there as one of the people who has interviewed the most researchers and practictioners on Long Covid developments. He also provides an in depth look at his own journey including an analysis of the treatments he has tried.
Gez also analyses studies to communicate the latest research on Covid and Long Covid. Gez is also notable for putting his own body on the line to test the treatments recommended to him by experts. For example, he recently trialled an intense fasting regime at a specialist clinic. He shares the full details of this experience in his blog including what factors you should think about before exploring such a treatment with your doctor.
Professor Danny Altman partnered with Gez to author The Long Covid Handbook. This was a unique resource early in the pandemic which summarised all the current treatment options from the literature. The book is now a few years out of date having been published in 2022. It is still a great approachable resource for patients or practictioners who want to learn about Long Covid.
Madeline Miller – author
Madeline Miller authored the 2011 novel The Song of Achilles and the 2018 novel Circe. The Song of Achilles has sold over 2 million copies worldwide. Madeline is also a techer who developed Long Covid after a Covid infection in 2020.
On her Instagram, she advocates for Long Covid by sharing her journey and championing the wearing of masks. She also shares many photos of her very cute cats.
Conclusion
As a Long Covid patient, it can sometimes feel like no one else knows what you are going through. It is difficult when your friends expect you to bounce back. Society has an unreasonable expectation that people cause their own sicknesses and can “bounce back” by “pushing through”. This approach does not work for Long Covid and in fact makes it worse.
You can read about what it’s like to be a severe Long Covid patient on this blog.
The social media personalities above have selflessly shared their storied. They have faced stigma and disbelief. They also have put their future earning potiential on the line from employers who may judge them for their illness/disability. We are forever greatful to them.
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