Carrie 1 explains that being direct with patients at least allows them to get organized and access the supports they need.

Transcript

I think it’s important to tell, to tell your patients that they may not get better. And I know that a lot of people, a lot of health professionals don’t want to tell people bad news like that, they want it sort of keep us in this holding pattern of hope, of waiting, maybe one day we’ll get better. And maybe we will, maybe I’m holding on to that hope. But it’s also important to tell people that they should prepare to not get better … Our baselines might get better with medications and pacing. But we don’t actually go back to our – the way we were before. And many of us will not have careers. And many of us will have to access disability supports … so health professionals basically hold us back from getting the disability supports by saying we’re going to get better. Then people are left without access to financial support or rehab or other things that they need. And so it’s important to also give the people with long COVID, I would say access to disability supports whether it be financial, but also things – I mean disabled parking passes. Filling out paperwork for the disability tax credit. Helping people get a shower chair so that they can shower independently. All small things but all things that really improve our quality of life and that require a health professional to help us with so. 

Yeah, and I would say don’t be scared to use the words long term disability. We need to hear it. We’re adults who need to plan our lives. We need to tell our partners, tell our kids, to tell our careers, we need to plan. And so we need to hear these real words. And it’s hard to say, but we’re able to take it. It’s very paternalistic to think that patients can’t handle being told that they’re not going to get well, we can. And that really bothers me when health professionals say that. They don’t want to tell us because they are worried about how we’ll – it’s what – excuse me, we’re adults, we can handle it.

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