Oonagh Carr: Living with Long Covid and Cancer

In this episode, our third and final part of our chronic illness and cancer mini-series, Oonagh Carr talks to Daniel about her profound journey living with long COVID and a subsequent breast cancer diagnosis. She discusses the drastic changes in her life, the challenges of navigating the healthcare system, and the importance of community support. Oonagh emphasizes the need for better understanding and research into long COVID, as well as the emotional toll of living with chronic illness. Through her story, she highlights the resilience required to cope with these overlapping health challenges and the significance of advocating for oneself in medical settings.
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[@jefferysmith3542]

What a great guest. Thank you for your very well expressed story Oonagh. I have to say the words ‘brain retraining’ make me cringe, but if anyone has ever received sincere and lasting benefit I will shut up. And Daniel, the best host and interviewer out there. And I mean that!

[@damienb6184]

The misinformation is still so prevalent, you would think it would be a bit better in terms of awareness. I was baffled that even the doctor I saw in the Long Covid clinic at the Montreal Jewish Hospital (which I had been on the waiting list for 2 years to get in), was terrible with this too. He talked to me for all of 10 minutes, scoffed at me wanting to lie down as I am severe and bedbound, and insisted the only treatment was rehab/physio, so essentially GET. I was so ill I couldnt speak much, so my mom spoke for me. She asked if in his opinion I had Long Covid or MECFS. He said, theyre the same thing. So basically what this told me is he knew nothing about the NICE guidelines. We told him I got worse with exertion, he just replied “well if you want to get better you need to do rehab”. And said there would be no follow ups. He did say maybe I have Cushings because of my shape and obesity (thanks I guess), and ordered a blood test for that. Really poor experience, and I left angrier than ever.

[@Post-ExertionalMayonnaise]

So sorry to hear about your experience

[@dovzeller4544]

Thanks Dan and Oonagh! 💙💙💙Oonagh thanks for sharing your story and for all the work you do learning and helping folks (patients and medical people) learn about long covid.
Hearing you describe what it was like going back to London-ooph 💔 (It’s been 10+ years since I’ve been to NY and I miss it and wonder what it would be like to go back, for some reason my mind goes to winter in Central Park, but the memories also seem to belong to an entirely different world, almost like another planet.)
Sounds really painful watching people’s baselines etc improve after chemo/radiation while you’re still dealing with all the crushing fatigue…
Such a difference when medical people are intellectually curious! And so frustrating and exhausting when not only do they have no long covid/ME knowledge but they don’t care to…
Love pacing as the “holy grail”!

[@Dimich1993]

Hello guys! I think about it as different seasons in life, and also what I did or thought in the previous seasons doesn't matter that much 🙂
Hang in there!

[@gwilkins4617]

👍