aerik feels alienated by the privilege and values displayed by others in online long COVID support groups.
Transcript
I haven’t spent a lot of time in disability – like diagnosis specific spaces. So, you know, there are spaces out there specifically for chronic fatigue or long COVID. I find those spaces sometimes to not be very aware of the complexities of living with those specific diagnoses, in addition to being trans, to being a person of colour, to being low income, to being an immigrant. I find a lot of those like spaces that are organized around a specific diagnosis can be really dominated by people with a lot of privilege, although they have the specific diagnosis. You know like some of the long COVID spaces like – you know people are like, “Oh, I just bought this you know $1,000 device” or “I just got disability because I went through a $5,000 neurological assessment.” There is a lot of that stuff and I think I just – yeah, there are ways that that’s really challenging for me. So I think that’s one of the hard parts about some of those spaces. So the spaces I tend to gravitate towards are cross-disability spaces, so spaces that are open to people with a variety of different disabilities and also spaces that really prioritize the leadership of the folks most impacted by ableism, racism, transphobia, misogyny, etc. I think those spaces tend to be better for me and spaces where I really learn a lot … 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.