Family in denial. No support team then or now.

I did not and still don't have a support system. I'm drowning in this disability that no one can seem help with

Nope was handed a paper to read about it and was told to educate myself and advocate for myself

Hey Kaitlin. I only got diagnosed a little over a year ago and I remember how I felt. My diagnosis is DM2. And until my diagnosis I kept thinking that we'd figure this out and I would get better. Finding out that you won't get better and not knowing what the future holds is more than just daunting. It is a life changing event. All I can suggest is what helped me. Therapy, to help me with the grief, denial, anger and bitterness. Research my condition as much as possible, so I would be able to make informed decisions. Lots of conversations with friends and family, to explain and answer their questions, learning to set boundaries related to what I can and can not do and how I want to be treated, exploring different hobbies to keep me engaged and interested in bad days and ultimately keep looking for a Neurologist that is willing to work with you and knows what they are talking about. Sadly, many regular Neurologists never see a Muscular Dystrophy patient and false information is a big problem. I wish you the best of luck. And I'll be happy to answer, should you want to chat.

I just got diagnosed myself it is kinda daunting at this point