[Jana]

I have had MG for 22 years since age 28 and relationships have been extremely difficult.  Romantic relationships and friendships have been next to impossible to hold on to.  As we all know it’s so difficult navigating this illness alone.  The feeling of not being understood has plagued me from the very beginning.  My own family never even tried to understand and made me feel like I was lazy or making things up despite all the procedures and treatments I’ve endured.  In the last 8 years I’ve finally felt more understood by them.

I’ve never been the kind of person to have many friends, just a couple of very close ones and throughout my journey people that claimed to be best friends disappeared.  I believe a lack of understanding and not being able to do activities with them caused them to disappear and, of course, that has been so painful.  I would love to have a romantic relationship, but I’m terrified that no one would want to take on my struggles so I don’t put myself out there.  I’m practically homebound so who would want to take a chance on me?  It’s not exactly a ringing endorsement for online dating.

I’m going to be starting Vyvgart as soon as my insurance approves it.  Putting a lot of hope in this drug that I can get to a point of at least being able to bathe without difficulty, run my own errands and just have some semblance of a meaningful life.

I hope all of you are able to create a wonderful life despite our challenges.  Thank you for being here to vent to.  Best wishes.

[Jana]

When I began getting severe lower back pain on top of my MG I finally had to ask my neurologist if he would request a handicapped placard.  Most days I do need to use it.  I was actually confronted by a man in a parking lot ignorantly telling me that I wasn’t handicapped, as he had seen me walking in the store.  I was so shocked by his anger that all I could think to say was that he doesn’t live in my body and to kindly get out of my face.  I’m a very emotional person and have been questioned/not understood for 20 years by my own family, old friends and past co-workers, so I just sat there for a short time and cried out of frustration.