A friend recently told me that Chris Cuomo of News Nation has begun a series about Long Covid (LC). There are several five-minute segments that began in October. In each segment, Chris interviews specialists like Dr. William Li, medical director of the Angiogenesis Center and Dr. Purvi Parikh, an immunologist and spokesperson from the Allergy and Asthma Network. Chris himself is suffering with LC. After one of the segments, he invited viewers to write in about their experiences, or with questions. Apparently tens of thousands did just that. Watching these segments has inspired me to begin a series of blog posts about LC. Intended to be both a memoir and an educational resource for the “living well” aspect of Further Shore’s mission, it is my hope that these posts will increase awareness about what some scientists are suggesting is a mass disabling event.
I’m embarrassed to admit knowing little to nothing about LC until 2023. The condition is also known as Long Haulers, Long Covid or post-acute sequelae of SARS-CoV-2 infection (PASC). During the lockdowns of 2020, a friend said that they had been diagnosed with something called Mast Cell Activation Syndrome (MCAS). Another friend was doing tireless research and expressing worries about Long Covid. I listened with care and concern to my neighbor and my friend, but never in a million years did I think that MCAS or LC applied to my health situation. Hindsight is 20/20!
It took an extreme health crisis one year ago to inspire me to find appropriate healthcare and to research LC and other diagnoses that are now all too familiar. I’ve learned a lot from my lived experience, from others with LC, and from my research. While it has not been a curative process, it has been palliating. It has given purpose to my days, and dare I say (?) even a feeling of “passion” for this new level of service. I have increased empathy for people living with chronic illness because I now experience the same ups and downs; good days and bad; stability and flares that accompany an abiding health condition.
For me, the answer to remaining hopeful and sane is to practice radical acceptance while continuing to seek and use palliative measures that improve my quality of life. I have more to say about radical acceptance, but that is for another day. I hope that what I have learned will in turn help others with chronic conditions. I’m sharing these reflections not because I am an authority on LC or chronic illness, but because I know that true understanding and empathy can be healing for anyone in pain, and I am aware that many are suffering. Also, please note that this site content is for informational purposes only and should not be taken as medical advice.
Through this writing, I hope to provide education about the nature of chronic illness, which will in turn increase their empathy for loved ones who may be living with those conditions. I will try to keep each post short, sweet, and digestible and will include links for readers who want to learn more about the various aspects being addressed. There are two previous posts (May 2023 and August 2023) about this topic for a little more background on the personal. Thank you for reading. Your comments are welcome below. Stay tuned.
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.
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I’m so sorry you are suffering from this condition. It is an eye opener and I feel much empathy for you and all the others who have invisible disease. I look forward to learning more as you explore this topic.
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Thank you dear Aleia – spot on!!!