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This is such great advice. I’d add that the system is so messed up, and there’s so little awareness around disability and so much ableism, that I have to actively remind myself that I can do everything right and still not have things go the way I need them to. Individuals can’t solve systemic problems. And it’s maddening and awful and I’m sorry others get caught in these traps, too.

It’s actually really validating to read that others go to drastic lengths to avoid the ER, thanks for those words ❤️

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You’re so welcome - I found the comments validating because it just reaffirms how much we try to avoid that situation. I wish our hospitals had more disability & chronic illness training… because many of us have horror stories that no one should have to experience.

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Excellent advice! I'm linking to this article, Kelly. Lots of useful tips and real-life experience burnt into your words. I hear you and agree. I recommend and tell all my single friends to identify an advocate regardless of their health status, but especially if they have an underlying chronic illness/condition. Women are often misdiagnosed as having a panic attack when it's a heart attack - an elephant-on-chest type of pain, tightness or any sharp pains NEED tests.

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Thank you Victoria! Part 4 will be dedicated to advocacy & I will absolutely be linking to your publication. It’s such a great idea to make sure you’ve got someone lined up even if you’re not currently sick or disabled.

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Thanks, Kelly - you may want to check out Sue's publication and this article, a different angle, similar issues, hospital issues and she used the same image ;-) https://open.substack.com/pub/suelick/p/who-can-you-call-from-the-hospital?r=a9y7d&utm_campaign=post&utm_medium=web

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Thank you! I’m still learning this app & how to find people to connect with - really appreciate the suggestion.

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Kelly, have a look through my 'most popular' articles and see who's commented/liked - then you can choose to follow/subscribe to them. There are lots more lovely empathetic and inspiring people in our Carer Mentor community that you'll resonate with ;-)

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That’s great - thank you for the tip! Getting there… slow and steady wins the race (with chronic illness and with learning a new platform!)

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Don’t apologise, you’re very welcome, you can DM me via the chat for tips ;-) There’s no race, just lifting each other up and we all rise together

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