10 Comments

I thought that since I was a seasoned nurse that I would be effective as my own advocate. I had been a patient advocate and for my friends & family for over 25 years. I was shocked at being gaslight when reporting my long covid symptoms. It was so early in the pandemic, that I didn’t know terms like post exertional malaise. I knew how to navigate the healthcare system and I was well aware of the blow off phrases healthcare providers use to covertly gaslight patients. I was both covertly and bluntly gaslight. I realized quickly that I needed my husband to attend all of my appointments as my advocate. I needed his working brain as the stress from the gaslighting or the pre appointment anxiety would shut down my brain. He is able to recite my symptoms, what we have tried, and in a non confrontational way push back on the gaslighting. He is a pharmacist by training, so he has the medical knowledge and experience, but I also know that his maleness carries a lot of weight. Besides the loss of my career, the loss of being my and other’s advocate was a real identity blow.

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Thank you so much for sharing Molly! I think your comment will be very validating for patients who may feel it’s their fault that they’re struggling to navigate the system. When we hear that healthcare workers ALSO struggle - it helps us have confidence that the issue is NOT us.

I so wish we could change the system so that it was kinder and more welcoming to chronically ill individuals - but that is something that will take time.

Until then - I strongly recommend everyone bring an advocate to the hospital with them if they can. If you don’t have one - ask if the hospital can provide one.

I hope this guide can help people have an easier go of things. Every little bit helps!

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thx 🌹🌻🌸💐💚💛💜❤️🌼😍🥰

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You’re welcome - I hope it’s helpful!

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Hey, I’m so glad to find you over here! And with all the wealth of compassionate information that you have right here, uninterrupted! And yes, here, you get to read more from me about my own life in and around chronic illness!

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Hey! Great to see you over here too!!!

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Though a relatively small sample size, I am truly dismayed by the results of your poll on abuse - it is beyond disheartening to hear of folks already in difficult situations being at the mercy of abusive caregivers

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Thank you Bob - the poll runs for three days so it’ll be interesting to see what it is at the end. I ran a similar poll on another site and over HALF answered “yes”. Very disheartening indeed.

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Thanks for sharing your experiences. Your tips and advice have come in really handy for me on more than a few occasions now. Looking forward to the next series as well. Best wishes.

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Thank you - I’m hopeful this round up will be more accessible and an easier way for people to share with friends and family.

I know I’m constantly losing links to articles I want to show people - so figured it would be good to put them all in one place!

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