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When Have You Felt Most Rare?
It’s one thing to have a rare disease, but a totally different thing to feel rare.
The first time I felt really rare was when I was talking to a close friend about my MG. My friend’s reaction and her complete confusion over my rare disease made me feel rare in the weirdest way.
In what moment did you feel most rare? How does this inspire your push for awareness?
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5 Replies
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I was a shy eighteen year old attending a dance and just getting used to being a myasthenic. A horrid boy with a red sports car told me I danced like a spastic! I now pre judge anyone with a red sportscar! That was sixty years ago and I still feel pain at the thought of my embarrassment, bewilderment and grief. Many of you will have had similar as it IS a bewildering and variable disease and people don’t understand.
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I feel rare just saying the word when you tell someone that you have myasthenia and they have never heard of it and you tell them it is a RARE autoimmune disease. Also since I am Seronegative I really feel rare since only about 10 or 20 percent of people with myasthenia are Seronegative.
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This fall, after being diagnosed for about a month I launched into reading (one eye at a time, of course) and accumulating enough information to fill a 3-ring binder. I started asking every medical person I talked to and knew personally how many MG cases they had encountered in their careers. The typical answer was zero to four. I saw many specialists, PA’s, pharmacists, nurses. The “rareness” hit home when I realized, in many cases, that I probably knew more about MG than the medical person I was talking to.
My GI doctor of 20 years, said to me IN JEST, “yeah, I read about it in a Readers Digest article on my mom’s coffee table back in the 70’s.” After we both stopped laughing, he admitted to 3 or 4 endoscopies for a few MG people with swallowing issues in the last 20 years.
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As you’ve noted, trying to explain MG is difficult, it’s a puzzle to clarify. Even friends do not understand, they comment that I look ok, they have forgotten details about strength, and stamina, and I don’t say much. Most don’t recall detail about others… unless they are close or are exceptionally empathic. After years of Covid it’s hard to find others with time and compassion. I notice support groups for other issues that a lot about other illnesses is also misunderstood. I’ve been told I’m lucky to have MG as it is so invisible. So that’s been my experience, I’m not one to argue or debate with others about it. Thanks for this forum. Take care!
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Hi to all MG PEOPLE. L ALSO FEEL THAT PEOPLE JUST DON’T UNDERSTAND. I am lucky that my career was nursing, most of my close friends are or was in the medical field. But those that aren’t just don’t get it that i can only walk 2-3 blocks at a time. The last time i was with them. they said i should come along, even thou i remind them that i can’t walk fast if i want to last more then 2-3 blocks. Well that didn’t last long. I sat down on the bench and told them i’d meet them at a stop that they’ll be coming back too. Of coarse i had some looks, but i did meet them at that spot. I did try to explain to them, that it’s like running a marathon without prepping for it. No matter how much i try to get better, it doesn’t work that way. I get twice as frustrated that i can’t ,because before this all happened, I’d walk 10 miles a day without trying. I ask them what’s the hardest thing you try to do, and just can’t. Well i tell that’s my life everyday. I can only do so much physical activity and i’m all worn out. I’m presently on the IV rituximab, it seems to work good for 2 weeks then i start feeling weak. If you are on this please tell me if it’s helping you. It seems every year i try a different med, because it doesn’t really work. It’s sad that it takes a year to know it the drug is helping or not. God bless all of you, like me i try to hang in there.
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Not long after I was diagnosed I had a flare up and my wife took me to the emergency room. It was very crowded and I thought the wait would be forever. After I signed in and noted that it appeared to be an MG flareup I went into the waiting room. People were complaining that they had been waiting for several hours, etc. Within about 10 minutes an aide brought in a wheel chair and called my name and off I went. I had not realized the seriousness of my rare condition until that time. MG must have appeared on some list of life threatening conditions and it triggered this response. I guess that was when I realized how rare MG is.
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