This is a long overdue message for all of my people out there with chronic illness. Our brains and nervous systems are taking a real hit with all of the fear mongering going on about Coronavirus right now. Exactly what we NEVER need to keep our health in check…more stress. Since many of us have experienced abuse and neglect at the hand of mainstream healthcare what we really NEED right now is to know there are people out there looking out for people exactly like us.
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Thankfully there ARE! First I want to share a reflection from my favorite author, Donna Jackson Nakazawa, who also happens to be someone who has dealt with a debilitating illness and is a science journalist. She wrote the following in a series of Tweets, “Few words about the reporting on COVID-19. As a science journalist who’s written 4 books exploring the intersection of immunology and chronic health conditions I’m unsettled by how often I hear the SAME refrain: Each time there is loss of life from COVID-19 we hear something along these lines:
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“DON’T WORRY Patient X’s death wasn’t surprising. Patient X had an underlying condition.”
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“DON’T WORRY Patient Y was 59. Her age and underlying health status made her more vulnerable.”
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While I appreciate the effort to mitigate public fears about COVID-19 each time I see these headlines I think of the thousands of patients reading these words who have chronic conditions. Chronic diseases affect 133 million Americans, or more than 40% of our U.S. population.
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So when you look at THOSE stats, not so reassuring.
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Just as importantly, this kind of health reporting reflects and, I think, worsens our already deeply entrenched societal biases that have long marginalized those with chronic conditions and categorized them as “less than.”
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In the course of my career as a health reporter I’ve sat with thousands of patients who are suffering from and battling chronic health issues. These patients ALREADY feel marginalized and misunderstood. Many have illnesses that are invisible. Their struggles are often unseen.
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When I see reporters write “DON’T WORRY, the only people dying from COVID-19 have underlying health problems” it rankles me.
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It’s just a new take on the old “look away” strategy that we’ve always employed so we can ignore those with chronic physical or mental health issues.
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It’s almost as if we’re implying that as long as COVID-19 only harms patients with chronic health issues, all will be fine.
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(As for those who die, their epitaph is chilling: they’re remembered for their underlying illness, rather than the lifetime they spent rising above it.)
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We should be speaking TO individuals with chronic illness and TO their families and assuaging THEIR fears (40% of Americans) rather than ignoring or unintentionally marginalizing them in COVID-19 health reporting, in order to avoid public panic. We have to do better.”
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AMEN!!! In addition to strong advocates I feel we also need some reassurance. I found some in the wise words of the amazing people behind VTLyme.org on their Facebook page, “While information about how the COVID-19 virus affects immunocompromised patients may be worrying to some Vermonters with TBDs (Tick Borne Diseases), remember there are steps you can take both to prevent infection and reduce the impact of a virus on your body. The knowledge and skills patients with tickborne illnesses have about making choices that support their health and well-being, along with a unique awareness of subtle changes in their bodies, are assets in any health situation including COVID-19.”
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A brilliant doctor I follow and trust, Bill Rawls, MD, who is a Lyme/Fibromyalgia/Chronic Fatigue Syndrome expert due to his own experience with illness, also shared an extremely straightforward and helpful point of view on the situation – “[Real Talk] Coronavirus: Who’s Really at Risk + How to Protect Yourself.”
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As I was saying to a client earlier today, we all have choices…and our diets are about way more than what we eat (though, lay off the sugar at least until this whole situation improves). I refuse to take the bait from media that decides for me what news I see and don’t see (hello, there was just a massive tornado in Tennessee…heard much about that?!) and taints my knowledge with their self-serving paintbrush. While The Stock Market may be going down our clicks on news sites and tuning our TVs in to news instead of our usual programs goes up, which is EXACTLY what these outlets are depending on. Fighting the urge to keep refreshing to check the infection/death count and instead staying the course with the sources you have admired and trusted all along is more important now than ever. If you feel like you just can’t help yourself, then call a friend, go out for a walk in the sunshine and fresh air, or do a guided meditation. Our nervous systems, which drive our immune function, are counting on us!
🖼 Image from womensvoice.com