How do you manage your own conditions while being a patient leader?

Sometimes, I don’t know how people do it—manage your own severe health conditions and still be able to reply and engage with every follower.

I feel like my neurodiverseness personally makes it extremely hard for me to reply to people when I am overwhelmed…I am always overwhelmed. I find I get myself sicker with trying to keep up, so lately all I can do is post a daily post and reply to the one group chat I trust. It’s like a never ending cycle of self guilt as I feel like I could be doing more, as if I should be doing more, but I can’t get the motivation to? It then makes me more depressed, and I really don’t want to be, it’s like I’m triggering myself and keeping myself in a negative toxic mental space. Some days I am able to remind myself it’s okay I do activism differently than others and I am strong with my self care, but other days I am too hard on myself.

I see so many activists on Instagram who are on top of the engaging and all I can wonder is how do you guys do it?? Is it hard for you like it is for me? What do you do to help yourself while helping others?

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.


Thank you for this, really. I appreciate it a lot, I needed to hear that today

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My privilege & pleasure Marie. Have a good weekend!

Hi Marrie, i suggest to read this please, I am Laryngectomee, (vocal chords removed in 1997 due to cancer in last stage) in 24th year & lost natural ability to speak & since them i am speaking with electronic device which sounds absolutely different as against normal human voice & this is my distinct identity for life time as magical counselor & global inspirational speaker.
I am giving live presentations during world conferences, medical colleges, Cancer institutes & also through virtual conferences.
**It does not matter to me AT ALL or to even any body & as a matter of fact they get inspired seeing me speaking.

Frankly speaking they admire, acknowledge my courage,confidence & my abilities of transforming my disabilities into die hard global inspirational speaker & as catalyst counselor. To me its 100% Zero impact to my disability.
I also like you to explore some of following links which will drive you to how i manage my own conditions while being Dedicated Patient Leader : ( read reviews to my biography, “SHAHENSHAH”)