The Hardest Thing for Me with Myasthenia Gravis
Last updated: June 2023
Let me be clear: There are so many hard things about myasthenia gravis (MG). There is the fatigue, chewing and swallowing issues, breathing difficulty, and vision problems, just to name a few.
But for me, the hardest part is seeing what it does to my husband! From total helplessness to constant worry - myasthenia gravis takes a toll on our loved ones, whether we notice it or not.
The ups and downs of MG
Those of with MG know the ups and downs all too well. Some days I can feel it on almost a cellular level, even before any physical symptoms start to come out. I try as hard as I can not to let it affect my mood, but sometimes it does.
However, for my husband it's like walking on eggshells. He never knows from minute to minute how he is going to find me, physically or mentally. To me, it is exhausting, just watching the turmoil that Jeff (my husband) is going through.
Both of us are very aware that we don't have control over when the symptoms hit or how bad they are. Yes, the triggers are there. But then again, some of those are out of our control.
My husband worries about me
Significant others may experience feelings of guilt about myasthenia gravis. Partners may wonder why they couldn't have been diagnosed instead of us. Jeff says he'd much rather carry that burden than see what I go through. Throughout our entire relationship, each time I have had a flare of symptoms it's like it's written all over his face.
Worrying goes right along with the guilt. My husband worries about everything from whether I am going to choke on food, to breathing issues. If my breathing is getting bad, he worries about when should we head to the emergency room or if the doctors will even know what to do when we arrive!
Speaking up for a loved one
I have learned to speak up and advocate for myself, but there are times when I just can't talk. Whether it's from fatigue, trouble finding the words, or literally not being able to get the sound out. This is when it's very helpful to have Jeff do the talking for me.
I'll just say there is a learning curve involved with speaking up and advocating for someone else. There are basic things that anybody can do for someone else. But then there are situations where you really must know the person that you're speaking up for. Especially if someone is non-verbal.
Knowing someone's signs and clues as to what kind of help they need at the time is key. There have been a few times where the outcome could have been different if Jeff hadn't known me the way he does.
My husband also needs to take care of himself
The really hard part has been for Jeff to see that he needs to take care of himself first and not to worry about me while he's at work.
It's okay for him to take time away from me. All healthy relationships need that, especially when someone is dealing with a chronic health issue like myasthenia gravis!
My most frustrating MG symptom is _____.