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
, I am glad you have access to good healthcare, though not for your hEDS. I do hope you are able to avoid injuries due to your EDS. I have a friend with EDS and I know for decades she mistook her hypermobility and that hip that seemed to pop out of the socket all the time as just some weird quirk of her anatomy, not an actual, serious medical condition. I know it can be pretty easy to hyperextend or injure yourself with EDS.
Best, Erin, Team Member.the most difficult issue for me is the lifetime I spent in pain and dysfunction while being ignored, discredited and disregarded by many in the medical establishment. I have lived in life altering pain all my life with an ever increasing litany of painful conditions. What I’ve yet to figure out is how those of us in our late seventies and above keep living in such distress every moment of every day.
Thanks for this opportunity to express myself. It means a lot
