Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Until very recently, I have always been ashamed of the fact that I have Myasthenia Gravis. I think part of that is because I never really had the opportunity to talk with other myasthenics. It can be a very lonely disease for a young kid. Another part is that telling people that I have Myasthenia is admitting that there is something wrong with me. It would be admitting that I am some sort of defective or damaged goods. When I was young I spent the better part of 2 years wearing dark sunglasses. It didnt matter if it was day or night. If I was going in public, I was wearing them. I also made up stories as to why I had to wear them. I had a teacher send me to the office for not taking them off. I was in a new class and he probably thought I was just being defiant. The next day he asked me to stay after class. When everyone was gone he asked if he could see me without the sunglasses. When he saw my eye he told me he was sorry for putting me on the spot. He asked me why I didnt just tell him instead of getting in trouble. That was a good question. Why didnt I just tell him? Because, I was ashamed.
Looking back, it would have been much easier to simply tell the truth. Not just to that teacher. But to everyone. I have even lied to my wife. Nothing major. Little stupid stuff. There have been times when she was telling me about memories form school and I have led her to believe that I was cooler than I really was. She read my journal entry about how I had never really kissed a girl and asked me about it. I got really embarrassed and didnt want to talk about it. I never really talked about how difficult it was for me in school with my own wife. I guess I dont want her to be ashamed of me. I know its stupid to think like that. My wife has always supported me in everything. She is one of the most genuine, unassuming, and kindhearted people I have ever met. Maybe thats one of the reasons I want her to think Im cool. Because I hold her in such high regard.
I think that being sick at that age really took its toll on me from a self esteem standpoint. I have close friends who know I have a disease, but that I have never explained to them what it actually is. They can tell its something I dont like to talk about.
Well, its time for me to start talking. Talking to you guys for the last couple of weeks has brought back a flood of emotion for me. Emotions that I have pushed far down inside me a long time ago. Its time for me to start letting people in. I told one of my closest friends about MG a few days ago. He told me that he had no idea what was wrong with me. He said that he was always curious but didnt want to ask. He could tell I was uncomfortable talking about it. I still am uncomfortable talking about it, but talking to you guys has helped me a lot. For the first time in a long time, I feel like Im not alone.
Looking back, it would have been much easier to simply tell the truth. Not just to that teacher. But to everyone. I have even lied to my wife. Nothing major. Little stupid stuff. There have been times when she was telling me about memories form school and I have led her to believe that I was cooler than I really was. She read my journal entry about how I had never really kissed a girl and asked me about it. I got really embarrassed and didnt want to talk about it. I never really talked about how difficult it was for me in school with my own wife. I guess I dont want her to be ashamed of me. I know its stupid to think like that. My wife has always supported me in everything. She is one of the most genuine, unassuming, and kindhearted people I have ever met. Maybe thats one of the reasons I want her to think Im cool. Because I hold her in such high regard.
I think that being sick at that age really took its toll on me from a self esteem standpoint. I have close friends who know I have a disease, but that I have never explained to them what it actually is. They can tell its something I dont like to talk about.
Well, its time for me to start talking. Talking to you guys for the last couple of weeks has brought back a flood of emotion for me. Emotions that I have pushed far down inside me a long time ago. Its time for me to start letting people in. I told one of my closest friends about MG a few days ago. He told me that he had no idea what was wrong with me. He said that he was always curious but didnt want to ask. He could tell I was uncomfortable talking about it. I still am uncomfortable talking about it, but talking to you guys has helped me a lot. For the first time in a long time, I feel like Im not alone.
Although I'm pretty sure I caught it from a toilet seat in Tijuana.
thanks for sharing
I think men are strong when they think they are being weak. A woman appreciates a man sharing his fears and weaknesses. That I believe is intimacy to a woman. I bet your wife feels the same way.
Ann
I think I am one of those who would rather call it an illness than a disease.I don't want to admit I have a disease. Maybe this is a first step.
Ann
They have helped me tremendously, in a short amount of time.
And they are often helping - even when they feel like hell.
Where else - are you gonna find something like that!
In recent weeks, there have been a lot of great new people, who have joined this support group. (I've only been here, since July 2011. Yet - I feel so at home? I feel like I have known the people in this support group, for years and years.)
You don't know!
How much you - and the other new people - have brought to this group!
Thank YOU!
Thank You - To All Of You!
Like snowbelt said. This place has helped me so much in such a short amount of time....after I got the courage to stop lurking and actually post something! :D
@Jessi- It took me a long time to build my self esteem. To go through something like this at a young age isn't fair. Your ego is so fragile when you're young as it is. What I finally learned is that you have to learn to like yourself. To be proud of yourself. This has nothing to do with the MG. Myasthenia Gravis does not define you. You define you. When I was about 25 I realized that I didn't really like the person I had become. I was jaded and apathetic most of the time. I decided it was time to make a change. I realized that everyone who made fun of me weren't doing it because of me. They had their own reasons. I won't make assumptions as to the reasons. They were fighting their own battles as we all do. Once I realized that truth, I no longer felt like i should be taking it personally. It was a liberating feeling. It changed the way I deal with everybody. My relationships with friends and family got better and better. I started to proud of the way I treated people. Proud of the way I handled situations. I started to be proud of my self.
We were delt a tough hand. But there are people here who know what you are going through. This is a great bunch of folks. I'm so glad you are here. I really could have used these guys when I was a kid. They're the best!
I just have to remind myself daily
Any person's life could drastically change in a minute. We are just like anyone in that reguard. We have to plan on living till 90 or maybe even 100. Who the heck knows. Why and where we got this is history .
ha
Ann.
Rosie
You truly touched my heart!
Marcela