aerik lives on low income and tells us how it feels to not have access to many treatment options.
Transcript
I think with something like long COVID there are so many things that can help, so many like treatments that are not covered that folks find helpful, but long COVID takes so many different forms and shows up in so many different ways in peoples’ bodies and so often you have to try stuff. You know like you have to try a supplement or try a medical device or therapy and that’s just not a reality. I mean, having extra money at all to pay for those things is not a reality for most poor working class folks. But then to do that and then not even know if it’s going work. I can take some money out of whatever, my food budget, to like try this thing if it’s going to help, but I tried a lot of things that didn’t help …There are a lot of people using like off label – things off label for long-COVID or you know treatments that are not yet approved so I think there’s a lot of that too. There are just a lot of things that could be very helpful but either are not covered or you know people are paying for things; you know for those of us who don’t have money that’s not an option … I’ve had to step away from some long COVID support spaces because it’s really painful to hear about people buying stuff that’s making their lives better or that’s like helping their symptoms and being like, oh, that could be really helpful but I don’t have access to it. And it really, I think, highlights for me the economic reality that surrounds things like this and the way that certain people have access to feeling better and certain people don’t, so yeah, I think that that’s a piece.
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- Getting Care for Long COVID – aerikaerik found a naturopathic training college where they could get care.
- Symptoms of Long COVID – aerikFor aerik, losing the ability to read and write meant the loss of an important way of coping with disability.
- Complementary and Alternative Care – aerikaerik has complex health needs and can't afford private care. They were able to attend a free clinic at a naturopathic college.
- Advice to Policy Makers – aerikaerik thinks disability support systems don't reflect the reality of living with chronic illness.
- Seeking Information About Long COVID – aerikaerik describes how the crowd sourced information about potential treatments.
- Support From Family, Friends, Communities – aerikaerik has benefitted from vital practical and material support.
- Support From Family, Friends, Communities – aerikaerik draws on their longstanding connection with the queer and disabled communities.
- Additional Expenses – aerikaerik lives on low income and tells us how it feels to not have access to many treatment options.
- Coping Strategies and Self Care – aerikaerik appreciates the beauty of slowing down.
- Advice to Healthcare Providers – aerikaerik appreciates healthcare providers who see their patients as partners in care.