Marie there is a HUGE community of caregivers in the world who not only don’t do activism anywhere, or don’t know that they are in a community (most caregivers feel very isolated & separate from the rest of society), many don’t even realize they are caregivers. If you ask them if they are caregiving, they look at you with confusion or a blank expression, but if you ask them if they sometimes ‘help out’ someone they love or are concerned about who also has a suspected or actual health issue, then they finally realize they are caregivers. That is amazing, isn’t it? But that’s how countless numbers of people live, struggling & not knowing why they struggle.
Generally speaking most caregivers are too busy trying to give support & care to another who needs it plus still trying to have some semblance of their life before another needed their care/help. I was off of social media 100% for years giving care to a father with dementia. I felt great if once a month I could catch up to reading email & once a week would get a supportive phone call from each of my friends. There just wasn’t time or energy left for me to try to reach out & connect to people in social media, I was doing better than usual if I was minimally meeting my own needs (nutritious food, hydration, stress reduction, good sleep, etc) as well as my father’s.
It wasn’t until months after Dad died of front-temporal dementia where I felt like getting back on social media to do frivolous fun things, never mind activism (for dementia, caregiving, military families & veterans & people who have had concussions and/or traumatic brain injuries), it took many more months to really see & understand the problems of people living with dementia & the people who care for them out of love (rather than providing care for pay although of course I believe they should be paid something, collectively they save the USA more than HALF A BILLION DOLLARS in health care costs & yearly spend thousands on the people they care for out of their own pockets without a penny of reimbursement or a ‘thank you’).
So don’t feel bad if your activism has to be limited Marie because at least you have enough knowledge of your health situation to know that activism is something you can be doing. Instead of comparing yourself fruitlessly to others apparently doing ‘more’ activism (and let’s face it, there’s a lot of ‘positive’ appearances in social media without a lot of actual healthy reality there to back it up), do what you reasonably feel you can do & make a full & complete life for yourself (including good self care, something I as a caregiver struggled with learning & practicing & now something I struggle to teach to other caregivers I mentor).
Activism is just one piece of your life Marie, it’s not it’s totality. You can take days off. And only compare yourself to yourself. Expect that there will be ‘bad days’ for your activism as well as good days.
You are really doing well Marie.