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    • #17392
      Jodi Enders
      Keymaster

      I would love to hear your experience about the topic I discuss in my column published this week: Feeling like a nuisance. 

      I believe it’s common for those with chronic illness to dwell on the fact that we can feel like an inconvenience or annoyance to loved ones and friends. People with chronic diseases may ask themselves, “Will I constantly feel like a nuisance?” The answer is no! This is especially true if we do our best to appreciate those who dedicate their time to us. How others choose to serve and accommodate us during our times of need reflects who they are as people.

      How do you return equal acts of kindness when others help us, but your body isn’t functioning correctly? 

    • #17412
      Rich Michaud
      Participant

      I don’t feel like a nuisance at all. Instead, I feel like everyone has forgotten about my weakness. No one is ever there to help me. Even my wife and kids think I am just fine and expect me to take care of them.

    • #17414
      Amy Cessina
      Participant

      I agree with Rich. My experience is exactly the same as his. Everyone ignores the disease and expects I can still do everything.

    • #17417

      For me, there is a kind of back-and-forth to this disease. On the one hand, at least in my case, it is not so debilitating that my functions are impaired. Thus the tendency for work colleagues and friends to assume that I am perfectly fine and have no limits on what I can do. On the other hand, I do have instances of flare-ups where I am evidently not functioning and this can be disruptive (if I am speaking in a lecture or singing in a choral group). I admit to being frustrated at times, particularly with dysphonia and my difficulty speaking (or singing) but I don’t feel like a nuisance. Instead it provides an opportunity to share (with those who don’t know) about the condition I have so they don’t need to feel anxious or upset (have I been drinking? am I about to have a stroke?). Those who know me also know that I cannot do everything that I used to do, and I need to moderate my activities (more napping, less talking!), but I am not incapacitated. I do think there is one characteristic of this disease that is confusing, and can feel like a nuisance both for those of us who have it and for those we interact with, which is that it is so unpredictable: when will flare-ups occur? how serious and prolonged will they be? what is the longer term prognosis? will it get better? will it get worse? This unpredictability, combined with the relative rarity of MG, makes it seem elusive, even unreal. But those of us who have it know its realities all too well, whether the symptoms are life-altering (even life-threatening) or more, well, a nuisance.

    • #17431
      Greg Josephs
      Participant

      After nineteen years of this silent disease, I’ve adopted a cane to eliminate balance problems. EUREKA!  My advice is to get one and see how the world reacts.

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