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MS and the Need to Be Understood — Share Your Thoughts

What does being ‘seen’ or understood mean to you when it comes to living with MS? Let's talk about it!

  1. I am on the church council and in charge of the Pantry each week which gives away free food and clothing. The people from the council want me off of the council because my word finding is sometimes difficult to make a point.
    My workers at the Pantry never think otherwise as they know I'll work extra to get things done to the best of my abilities.
    Word finding is frustrating and falling is scary but I refuse to give up. Sometimes though, I wonder if the council is right and I should quit. It's a quandary.

    1. I second here. You’re clearly putting in a ton of hard work and care with the pantry, and that matters! Word finding might slow things down sometimes, but it doesn’t change how much you’re contributing. It sucks when people don’t see the full picture, but honestly, your dedication shines through. Maybe talking it out with the council could help them see things from your side. You’ve earned your spot. Don’t give up on what you’re doing! Wishing you the best, Latoya (Team Member)

    2. Sadly, younger people may think of "word seeking" as a symptom of dementia. Ive been on the wrong end of that more than once!

  2. Wow, that's all KINDS of messed up. You'd think a church (a church!) wouldn't treat any of its parishioners this way, let alone someone who volunteers their time! I simply can't imagine any of the needy folks who come there complaining about a person's disability.

    To this simple reader, the rest of this "council" sounds like an HOA or upper mgmt at some snooty company....judgy and petty.

    But even a snooty company has an HR Director who would warn them of the slippery slope they're on with this outlook! But getting back to church, this is VERY unchristian of them (sry, I'm just assuming). I'm sorry you're going thru this. As for me, I'm only truly seen by my best friend of 20+ years. My own family has been self-centered and without compassion. Go figure!

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