Life Will Never Be the Same

There is no joy left in life for me with myasthenia gravis (MG). I know most people would read that sentence and think, hmm ... depression? No, it's not depression, it's just reality for me with MG.

Why not depression?

This is kind of hard to explain. Especially since, from everything I've read, depression can go hand in hand with MG. I don't know anybody who wouldn't feel depressed with some of these symptoms. One minute you're fine and dandy, and the next minute you're not able to do anything on your own. But I wonder if this is more of a situational feeling versus depression.

For me, it becomes depression when I don’t deal with the emotional aspects along with the physical aspects. Just like MG, depression is not a one-size-fits-all. After counseling, medications, and all that has run their course, I’m still left with a life that will never be the same with MG. That's not depression, that's my reality.

Life will never be the same with MG

For those of you who have read my articles, you know I've dealt with symptoms of MG most of my life before getting a diagnosis. But now at age 61, I'm still struggling to get treatment for the seronegative MG. I now know I have limitations. And those limitations ... well, they're very limiting for me, to the point where I can't go, I can't do, I can't talk.

I know I'm only 61 but I feel like I'm caught up in a 150-year-old body. It feels like there is absolutely no one that can do anything to help me regain that strong independence I once had.

Even if I happen to get some sort of treatment, I know all too well how quickly a flare can put me right back in the same place. That feels more depressing than coming to terms with what my life looks like with myasthenia gravis.

Doctors have misdiagnosed me

I've had doctors try to tell me that I have functional neurological disorder (FND). But they could never prove that. The medications for MG help my symptoms. My current MG specialist laughed, and said, "Yeah, I don't see anybody with FND doing well on Mestinon every 3 hours. That's not a medication for FND."

Living with the symptoms

All my life I have tried to cover up the symptoms of MG so that I could look like any average person. I have not tried to explain to people why I can't do something that somebody my age should be able to do. Even my husband keeps telling me that I need to just stop. He says he even has a hard time telling whether I'm just pushing through or whether I am feeling good because I have become that accustomed to covering up the symptoms until I can no longer hide.

Pushing through to maintain my independence is actually hurting me. That is why there is no joy left in life for me. At least not the long-term joy from the independence I once knew. Just like the symptoms of MG, nothing is stable forever.

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