aerik
2 years since diagnosis
Age at interview: 43
aerik has been living with long-COVID since early 2020, experiencing chronic fatigue, brain fog, dizziness, flu-like symptoms and heightened allergic reactions, among other ongoing symptoms. aerik had already been living with chronic illnesses for many years before contracting COVID and has found that those previous experiences have prepared them for long-COVID (e.g. knowing how to advocate for tests, treatments and accommodations and navigate healthcare and disability support systems.) They have also built a strong support system within disabled and chronically ill communities, where they continue to share care and learn more about how to live with long-COVID and other chronic illnesses. In particular, learning strategies from other poor and working class disabled people around meeting needs and sharing resources on a low income continues to help aerik access the supports that they need. They ask that those working in government and policy decision-making positions directly fund supports created by and for low-income and multiply marginalized disabled and chronically ill people, and centre the leadership of these communities when making decisions about policies and programs that impact them. They ask that doctors approach long-COVID care with an openness to learning together with their patients and apply what is already known about other long viral and chronic illnesses to long-COVID care and treatment.
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.