14 Comments
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Nic's avatar

Thank you for this powerful piece, I'm having a big old messy cry 😭 (lived with post viral illness pre covid, now have LC and the clusterfuck of associated conditions) and struggle so much with how limited my life is because I shield to protect myself and my kid. The pain of being a queer leftie and seeing my so called community extend no care by enacting covid safe protocols has left me with very little hope. Disability justice and the still covid-ing communities keep me going, somehow. Thanks for quoting Leah's work, might go at get their books from my shelf for a bit of a pick me up.

Thanks again for being the voice of the millions missing. I watch many friends with powerful jobs and can't help but think how they'll cope when they'll inevitably lose it (because let's face it, they're more at risk of LC as high achieving neurodivergent folx with preexisting chronic illness)

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This is Rachel's avatar

I feel what you're saying so hard. The abandonment of the left--its hypocrisy--is especially painful for so many of us. Leah's work is a great inspiration and comfort to me, too. And yeah, it does feel kind of like waiting for a house of cards to fall, right? It seems like every day another friend comes to me with weird GI symptoms and I end up casually suggesting h1 and h2 blockers or with dizziness and I casually suggest electrolytes...it's a tragedy in slow motion. Thank you for reading, and for hanging in there and doing the powerful work of surviving. Love and solidarity.

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Jess Badger's avatar

I have ME/CFS and have been severe for a few years but affected for nearly 20. As you can imagine, as I pictured myself going to IKEA, I had visceral reactions of dread and anxiety. Not becuase of the lights, sounds, smells, or vastness of it but knowing what it could do to me to overexert.

People just don’t understand how risky it is. It’s nice you know that we share that understanding, even though it’s such a painful reality.

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This is Rachel's avatar

Yes--a painful reality, when shared, becomes less of a burden. Thanks for reading, and for your powerful voice in your own newsletters! Love and solidarity.

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Kristin A. Demoro's avatar

As a person who is living with Long Covid, my idea of a urban nightmare is shopping at IKEA and being stuck in an endless loop, never able to escape. I completely get it, this wanting to be able to go furniture shopping without becoming incapacitated afterwards. You put the feeling of this into words so wonderfully and accurately. I'm happy to read you're maintaining your energy levels now. This is an important task, to write about illness and disability. Thanks for being here.

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Leo Ruthe's avatar

As usual, I finish one of your pieces feeling less alone. Love this one, and you! 💕

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This is Rachel's avatar

Love you so much, friend!!

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Kristin Derby's avatar

I have used many of the same words about morality and reality with people who question why I continue to mask. Thank you for sharing your story, solidarity forever.

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Erin Kaye Stafford's avatar

Hi!! I personally have me/Cfs due to long COVID- I’m working with a company that’s creating a chronic illness zine and I love your writing. I’d really love to feature an essay of yours - if you’re interested, please email me! Erin@justaddbuoy.com. It’s a paid opportunity :)

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Ally's avatar

I appreciated the Tolkien references but even more I appreciated how I felt seen as a disabled woman. Many moments reading your essay I had to stop and take a deep breath wondering how our stories were so similar. The feelings that invoked brought me to tears. I allowed myself to feel them. I struggle writing about my chronic illnesses and reading your piece was deeply healing. Thank you for sharing.

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This is Rachel's avatar

Thank you for reading and commenting! It is deeply healing for me to connect with folks who have been through similar experiences, as well. Chronic illness is so isolating, such a taboo topic in the mainstream world. Sharing our stories and finding solidarity is so important. <3

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Mamacat's avatar

I know that ikea and it is a nightmare. Thanks for reminding us how bad it really is. I have long covid too and it is no joke 🙏

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This is Rachel's avatar

Isn’t it?? I’m sorry you’re dealing with LC too, thanks for reading ❤️❤️❤️

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Mamacat's avatar

Thank you, for bringing my attention to the problem of over exertion for people with long covid, I really need to pay attention to that 🙏❤️🙏

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