1) Talk to other disabled people. Building community with other people with long covid is going to be the best way to stay informed, find solidarity, share the latest studies and treatments, and advocate for your specific needs. These are people who will feel empathy for you rather than sympathy.
Talk to people who have other disabilities. Long covid is new, and therefore there's not the same knowledge base within that group. Disability activism and survival were happening long before covid. There are so many resources from other parts of the community.
2)Research other illnesses that existed before covid that have similar symptoms. This can introduce you to coping skills and treatments that you may not have otherwise considered. C19 can also trigger illnesses that we have known about for a long time; looking into them can help you access treatment
Specifically look into:
- Chronic Fatigue Syndrome (CFS or MECFS)
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Autoimmune diseases, especially any that run in your family
- Brain fog
- Match your own symptoms and experiences!
3) Join disability activism movements. Yes you are disabled and having a harder time doing things. But the outrage you feel ever time a doctor dismisses you, your job penalizes you, you are denied state benefits? Channel it. There are people doing the work and you can be one of them.
You don't need to reinvent the wheel. Your experience is not unique. Disability activism has a long history, it has established organizations, communities, political goals. Understanding that you are part of a wider movement allows you to contribute only what you can, in ways that matter.
Comments
- Chronic Fatigue Syndrome (CFS or MECFS)
- Postural Orthostatic Tachycardia Syndrome (POTS)
- Autoimmune diseases, especially any that run in your family
- Brain fog
- Match your own symptoms and experiences!