I live with a rare neurological condition called "stiff person syndrome" or SPS.

It's affected my life since I was 15. It has robbed me from a lot of freedom over time. It's mad getting/keeping a job very difficult and I refuse to be on disability.
It's emotionally got me on the frits, because no my diagnosis I've received isn't necessarily fatal, but the underlying conditions that's causing my condition will.

I'm currently being looked at by the best neurologists in the country for my medical issues, I will be in clinical studies after my results come in.

I'm currently being checked if I have cancer, parkinson's disease, lupus, and MS.

The thing that has ate me up since having this. I've been taking this one day at a time.
The symptoms are very difficult to manage and live with. One day I'm fine the next minute I'm on the ground difficult to talk breathe or move. So no visible symptoms on tests at a hospital and I'm immediately ousted for being on drugs or psych a few years ago.

Living with this has been hell on my mental health. Many days I want to die so I can't feel pain anymore. Many days I wish I wasn't so different, and how difficult to live a normal life around the problems my disorder present.
I'm currently awaiting to find out if I'm going to have to worry about dying in 5 years or 20. It doesn't matter to me, I'll be very content if that's not the case, but I'll have to make compromise if I don't have long to live because it's progressively gotten worse.

I know I've seen a therapist for this, but I never had one who gave a crap about me or my issues.
I don't need medications, especially if I'm worried about conflicts to meds I may be put on soon if my tests come back both negative or positive on some other stuff.

It's that I need someone to talk to about coping the fact if it is really bad like they were worried about.

How can I cope knowing I will die slowly and painfully?

I fear death greatly and I fear this taking away my ability to speak my mind or live period.
How can anyone cope with that?