aerik draws on their longstanding connection with the queer and disabled communities.
Transcript
So I feel I am in community with a lot of folks with long COVID. I’m part of online support spaces for folks with long COVID and folks with disabilities generally and I have been since the beginning of COVID and before. I have also sourced a lot of information from those spaces. So those were the places where I learned about the treatments that I’m currently using. Those were the places where I learned – you know where I got the Mast Cell Activation diagnostic checklist and I filled it out and I took that to my doctor, so a lot of information has come through – that I bring to my providers has come through other people with long-COVID or other people with disabilities. So I feel like I’m perhaps in a different place than folks with long COVID who didn’t have experiences of being disabled prior to COVID because I was pretty well resourced and connected. I had disability supports in place … I’m also in long-term care sharing, mutual aid relationships with other trans and disabled folks and queer disabled folks and disabled folks generally, both locally and at this point internationally.
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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.