Monday, May 25, 2009

The MGCTHT group topic "de jour" today seems to be -- "How does Myasthenia Gravis affect your relationships?" Man, this is a DEEP one!!! For those of us who are married -- relationships are either strengthened OR strained. For those of us who are single -- TRUE friends are discovered. Chronic illness is tough -- PERIOD. Cancer, paralysis, stroke, dementia, ALS (Lou Gehrig's) -- those are a few that come to mind where spouses, family members, friends DO often, but NOT always, seem to rally around the patient. MG is somehow different. Family, friends, even those medical professionals who are NOT familiar with our symptoms, doubt the sudden onset and severity -- UNTIL they witness it first-hand. Trust me, it ONLY takes once to make most of them believers. The MAIN problem is that SOMETIMES, we "appear" to be "normal". So, people "assume" that we must be faking/exaggerating our condition.

I cannot speak for everyone -- but I DO know several MGers face-to-face -- and THEY are like me -- we do NOT "crave" attention. In fact, I INTENSELY want to "fade" into the background. I want to view life from the "sidelines", if you will. MG irritates the "snot" out of me in this regard. I do NOT want to be noticed -- NOW, everyone is constantly asking about me -- "How is Jana, today?" "We haven't seen her in awhile, is Jana ok?" "We saw Jana walking and she was dragging her leg, is she ok?" -- and on, and on, and on. Let's not even TALK about the looks on faces when people hear my voice -- my slurry, drunk sounding voice!!! OH, just let me be invisible!!! (Yes, I know that these friends and family members are VERY loving and kind -- and I DO appreciate their prayers and concern -- I have just always been a very private, independent person -- and MG is "getting in my way"!!!)

Ok, enough of my rant. The point is -- because we wax and wane -- our symptoms "come and go" -- SOME people think that we AREN'T as seriously ill as we ARE. Case in point: A wife with MG who has worked all day comes home and collapses on the couch. She cannot do anything else. Her husband thinks that BECAUSE she was able to do her PAYING job, she should be able to do her household work, too. MG doesn't work that way. We have a certain amount of energy for the day -- when we use it up -- it is gone -- until we get rest -- it "ain't" coming back. Even WHEN we rest, it may not ALL come back. But, PUSHING does NOT work with MG -- it only makes us worse -- in fact, pushing when we are tired can land us IN the hospital -- in something called respiratory crisis -- which means we are on a ventilator. EEEEKKKKKK!! Something we do NOT want!!!

*SIGH* I've written a "book". I'll save the rest for another day.

1 comment:

  1. This is so true, and I'm glad you wrote about it. A friend of mine recently got married and she was upset with me because I didn't travel 2 hours to her wedding. When I explained I was just too tired and didn't think the trip would be good for me, she said, "I didn't know you were that sick". Technically, I am in remission, meaning that I still have MG but I don't have to take medicine for it. I still get tired on bad days. Anyway, I thought to myself, "you never thought I was that sick when I really was very sick; you never came to visit me at my worst and now you are upset that I didn't come to your wedding". MG does have a significant effect on your relationships, and not just spouses. It is as important for others to understand how and what we feel as it is that we forgive our friends and family for misunderstanding. That can be very hard to do. Again, thanks for talking about this.