aerik describes how the crowd sourced information about potential treatments.
Transcript
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 … I do feel like I’m here because of crowd sourcing my health and because I had those relationships with providers, prior to this, who understood me and my disabilities and who have really trusted me, I think, to kind of lead in my own care and to know what’s going on with my own body and that’s a huge privilege. It’s not something that most folks I know have access to. That is a very real part of I think why I’m feeling a bit better.
More from: aerik
More content
- 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.