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Understanding life with LEMS
Good morning all! Happy Friday!
Recently I had a conversation with a friend who was just diagnosed with a severe chronic illness.
Her illness came on suddenly and many people stepped up to provide a “meal train” for her.
Somehow we got on topic about my illness, as she asked if anyone ever did this for me. My answer was no. In the five years that I’ve had LEMS, I’ve never had dinner brought to me, aside from some dinners Price sent me from a meal plan and an ex I lived with.
She wondered why that was and decided that it was “because my life didn’t change overnight” and instead changed over months and people (including her) didn’t think of me as “ill” because I looked “healthy” and seemed okay.
This was a sore subject for me, and I’m sure many of you have felt the same way.
I would be so thankful to even have one person drop off a meal during my infusion, but alas I’m used to taking care of myself and have learned there aren’t too many people I can truly depend on.
So, I want to ask you all:
- What things do you wish the “healthy” world would understand about having LEMS, or even any chronic illness?
- What things frustrate you the most about having LEMS?
- What things would make your life with LEMS easier?
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