Last week, I woke with chills and a slightly upset stomach. No cold symptoms but I’d been isolating from the contagious Omicron, so I wondered how I’d picked up any virus other than covid. Staring at my computer while sipping my morning tea, I felt awful.
I decided to do a rapid covid test. At least then I’d have an explanation. Fifteen minutes later, no blue line verifying my experience, no clarity. Truth was it didn’t matter since I couldn’t function. I cancelled my meetings and went back to bed.
Three days later, I still felt crummy. I found myself saying that these symptoms weren’t like any stomach bug I’d had, I hadn’t been with anyone who could have spread a ‘normal’ virus to me, so it must be covid. Why did I care? Blue line or not, I still had to wait it out to feel better.
Living with difficult to diagnosis auto immune diseases for so many years, you’d think I’d be used to this murky area of symptoms that can’t be seen or verified. But I’ve also experienced the psychological difference of physical impairment from something that’s visible or shows on a lab test or x-ray.
I’ve written about the places of intersection between pandemic and chronic illness (Long Hauler – what’s your story about life with chronic illness — Is this new job market good for us, the chronically ill? – – Pandemic, like Chronic Illness, is a marathon not a sprint.) Funny thing how life offers nuggets of learning.
If you’ve never experienced this, it’s hard to grasp why a diagnosis feels so important, even without a cure or treatment options. It validates your experience when you’re living with symptoms that disrupt your life. You have a reason for how you feel and behave the way you do. You are not a malingerer. You are not an hysteric. Working with people living with chronic illness as I do, I’ve learned that I’m not alone. My clients’ stories are testimony.
That’s why I was excited to listen to Ross Douthat interview Meghan O’Rourke about chronic illness and Covid on the Ezra Klein Show, “What Living on the Edge of Medical Knowledge Can Do To You”.
Their conversation highlights what living without a diagnosis can do to a person’s life. It sheds a light on how this pandemic might shift the medical establishment’s response to the unknown. And they are credible sources. Each is a highly respected journalist who has lived with disease symptoms that are difficult to diagnose and treat, and each has written a book about their experience (The Deep Places and The Invisible Kingdom: Reimagining Chronic Illness.).
Here are some snippets of their thoughts on long covid and the medical system’s response to this:
- “One key difference here, between how long Covid has been experienced by the medical system and how other illnesses have been experienced is that the traditional pattern is that chronic illness sort of creeps up on society…”
- “… <Covid> … such an enormous scale … harder to write off. The evidence is before people’s eyes. It’s in the hospitals. It’s in doctors’ rooms.”
- “… so many doctors either got sick with Covid or knows someone who got sick with Covid.”
On diagnosis:
- “…there’s valid critiques to make of <the emphasis on> diagnosis, especially as the end point of a chronic illness story. <It>isn’t the end point when you’re dealing with a chronic illness. … chronicity itself is really hard to deal with …”
- “Diagnosis … comes from the words to know … Knowledge … helps you know something about a disease….And it gives you a point of contact to explain to others, ‘This is what I had.This is what’s wrong with me.’ “
On patient presentation:
- “… I was what doctors call “heartsink patients” … patients who go from doctor to doctor. Their medical records have a long list of their symptoms… <these patients> won’t take no for an answer and insist something really is wrong with them. And that was me. Very early, I realized, oh, I should not tell the doctor all my symptoms … I should focus on the one <symptom> that’s causing me the most suffering.”
- “…there is incredible pressure to be a reasonable patient… the language that we end up using can sometimes obscure or … minimize the actual experience of the suffering itself.”
On attitude:
- “Part of the chronic illness reality is … you may or may not have a diagnosis with these kinds <fibromyalgia, lyme disease, etc.> of contested illnesses …. in the case of long covid, it’s not exactly clear yet what that diagnosis means. We’re still learning about it.”
- “stronger’, ‘you’re going to get over it’, narratives of overcoming or of succumbing kind of spiritually and beautifully. We don’t have a popular cultural narrative of chronic illness. No one wants to listen to that. It’s hard to listen to. It’s a hard, chaotic story to hear.”
Want to know more? You can listen to the entire podcast or read the transcript.
Have you struggled to get a diagnosis? Do you live with chronic illness? Do you live with long covid? What’s your story?
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