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#WHATMAKESMERARELEMS Question
For Rare Disease month, Lambert-Eaton News has a fabulous challenge going on. If you don’t want to write your own story or put together a video, I want to make sure YOU are included as well! So let’s start a great string here with you answering a specific question for #WHATMAKESMERARELEMS:
Question: What is the one thing you wish others understood about living with LEMS?
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2 Replies
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I wish that people understood that just because we may look “healthy” on the outside doesn’t mean we are. I have become really talented at hiding my illness from people and “faking” being well because I don’t like feeling vulnerable or having people feel sorry for me. Unfortunately, this seems to make a lot of people forget that I still have a chronic illness.
Another thing I wish I could make people understand is that a chronic illness is lifelong. I have so many people who are confused and think I will be able to just “stop” getting IVIG one day and I have to explain that this will be continued for the rest of my life.
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Ashley,
Thank you for sharing. Everything you mentioned is so true. I also don’t want anyone feeling sorry for me. I’m a better person because of LEMS and have made some amazing new friends- like you- that I never would have met otherwise. But, it’s hard work. I think that LEMS patients are so close and supportive is because everyone experiences the same “Invisible Illness” issues, everywhere.
Yeah, I had one person who got it upon meeting me. There was another friend in the group who had just gone through cancer treatment. It devastated us all as we love her bunches. When I met a mutual friend and explained why I couldn’t go to the meetings every single week because of my IVIG schedule, she very soon after summed it up this way. She said ” So, as much as Kathy is going to have to have concern about her cancer coming back, her treatments are done and she’s doing great right now. It sounds like your treatments will never be done? ” I replied EXACTLY.
People have very short attention spans. Not many understand that things go on forever for us because nothing else does!
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