Invisible Illness
What aspects of your rare disease are invisible to others?
Fatigue is the most debilitating and embarrassing.
Fatigue, balance, pain
I have Generalized Myasthenia Gravis (gMG), at 1st I refused to park in a Handy Cap space. Until one day on the way to the doctor's office my legs gave way and I was only have way to the door. Nobody see's the muscle weakness, difficulty breathing, rapidly overheating or the overwhelming pain of this disease.
There are times that I'm scared to go for a walk as I never know when my legs won't respond. I rarely drive anymore, I'll drive under three miles, I don't want to put myself or anyone else at risk if my legs or arms give out.
However, gMG is a daily adventure and every day the adventure starts over again. I always meet the new day in a great mood with the expectation that this will continue throughout the rest of the day. However, if something changes I'll deal with the problem the best that I can.
, thanks for taking the time to share a bit about your rare disease here! I know it can be scary when you can't rely on your legs to keep you upright anymore. When you can't predict when those bouts of weakness will hit, it makes it kinda hard to plan your errands for the day. That said, I like that you keep a positive outlook on life and greet each day in a good mood. That's pretty awesome!
If you're interested, we do have a sister site dedicated to MG, which you are welcome to check out -- https://myasthenia-gravis.com/. And some of the members of MG community have shared their experiences living with gMG. Here's one of them -- https://myasthenia-gravis.com/stories/living-with-gmg. You can be a part of both communities, if you would like. No pressure; just wanted to share the information.
Thanks again for jumping into the conversation here!
Best, Erin, Team Member.
I have a painful connective tissue disease which is invisible. It impacts every part of my body, and leaves me feeling like a bag of loose bones. But no one is completely aware of what is happening, neither my children or doctors
, there's no other way to say it; that just plain sucks. You shouldn't have had to endure all that and it would be nice if you could go back to all those medical professionals and others that doubted you and gaslit you and had to see your diagnosis and apologize. I know it wouldn't change anything, but, boy, it would be nice if people sometimes had to literally face someone they had wronged.
Apologies for my tirade, there. And, I am sorry to say I have no words of wisdom for how to manage chronic, significant pain. I do hope you are able to find some modicum of comfort.
Best, Erin, Team Member.thank you. Your response means a lot to me
