I wish others knew that...
What is one thing you wish more people knew about living with a rare disease?
It’s frustrating not knowing anything. It weighs on us heavily.
It’s so isolating. We can barely share about what we have without being invalidated or made to feel like we are faking or exaggerating.
I know I’m scared, not of death but the pain of how I will get there. If I share I’m told “everyone is dying” but not ever is suffering and reaching their end this soon. “I could go out and get hit by a car and die.” Yes, you could… we all could, but that’s not the same as facing a fatal illness.
, ugh. Those unhelpful comments make my blood boil. How dismissive and cruel! Like you don't already know how things shake out for all of us in the end (we all die). Your experience and your journey are valid and deserve respect and empathy, not condescension and minimization.
And, you're right. You are in kind of rare territory when you probably know what the cause of your death may be and that it's rare, so less people will even understand your diagnosis, let alone your experience.
Thanks for sharing and know you are never alone here (but, yes, living like this is incredibly isolating and no online community can fully replace in person care and support).
Best, Erin, Team Member.
That you are telling the absolute truth when you say you can not do one more thing. It isn't just normal tired, it is complete and overwhelming exhaustion! I have started saying I am at the point of " sit down, lay down or fall down". I have MG.
, yes! Why in the world do people doubt you when you tell them you are at your limit? After all, they aren't in your body, so how would they know? Sheesh!
Also, if you are interested, we do have a sister site dedicate to MG, which you are welcome to check out and you are welcome to be a member with both communities, if you would like -- https://myasthenia-gravis.com/. Thanks for joining this conversation and sharing what you wish others knew about living with a rare disease. I think many other community members agree wholeheartedly with what you wrote.
Best, Erin, Team Member.
The anger. I am so angry! Everyone calls it depression but it started as anger! I am angry at this painful, infuriating body that I feel trapped in! I would be angry at god, if I believed anymore! I'm angry at all of the useless hours I spent praying, trying to understand how a divine presence could screw up this badly! I'm angry at all of the "nice" people who offer me their prayers, as if maybe they can make him listen. I am incredibly angry at the endless line of surgeons, doctors, nurses, therapists and therapy, some which made things worse, most who barely listened as they type in my BP and other vital signs including my pain levels to the computer and pass me down the line to the next "expert" who just looked it up on his phone right in front of me but wants to argue about his expertise on the matter! I'm angry at my family for pushing me and making me feel guilty, when I fail! I'm angry that I have most likely passed it to my kids and I will most likely never have grandchildren! And I am really angry that my useless ex husband does! I'm angry that life is so unbelievably unfair! I'm not depressed, I am angry and I have a right to be!
, you have every right to be angry. Those feelingsI'm sending you (((hugs))) are 100% valid. The only thing I would argue is the notion that you've failed. You are navigating a crazy world, with more than the average load, and successfully raising children. You have succeeded every day you put your feet on the floor and show up. I'm sending you (((hugs))), lov and light. - Warmly, Donna (Team Member)
