Many chronic rare and invisible diagnoses
Community Voices

Depression has a hold on me

I’m laying here in bed. That seems to be all I do these days. In less than 3 months I’m going to be 26. The age I’ve been dreading for years. Yes, I’m fortunate that I turn 26 in January so I have basically an entire calendar year still on my parents Insurance. But still that doesn’t make me feel a whole lot better about my life. I’m fighting for Ssi with the assistance of a lawyer, but he says it still could be 12 months before my trial. And even if I get approved, all my specialist are out of state and I don’t know if they’ll be covered/in network. And even if they are, I have no clue how I’m going to pay for the co-pays. Prescriptions alone will drain every cent the government will give me.

You probably are wondering why I’m complaining. I would be. I have so many diagnoses, I often forget what half of them are. My brain is currently not working so great because I’ve gotten 4 concussions in 8 weeks.
Add that to Vacterl, klippel feil, pots, dysautonomia, eds, gastroparesis...just to name a few big ones...my life just has continued to spiral down hill since freshman year of high school. (Yes 10 years).

I’m at the point where I feel like my life has been a waste. I haven’t accomplished a single thing I had set out for myself after graduation. I didn’t go away to college, I didn’t get my bachelors, I didn’t get a job, I don’t have my own place, I don’t even have my own car, I’m not married and ready to have kids...instead I’m living with my parents, completely dependent on them, can’t leave the house without their permission and knowing where I’m going. I can’t even fully take care of my pets and my parents constantly are yelling at me because of it. I’m always afraid of getting in trouble or getting hurt/something medically happens. Been single for over three years. I don’t trust anyone because I can’t even trust my own body. I never know how someone is going to react to how I’m acting. Whether it’s acceptable or it’s not enough. I never know if I’m being treated like I’m 5, 15, or 25. And I never know what age my body is going to act either.

Everyone around me is getting married, getting their dream jobs, having babies, buying new cars and houses, and me...I get asked if I can handle babysitting a school aged kid for a few hours by myself to earn $20 which is likely the only money I’ll get paid maybe even until Christmas, yet I’m still expected to get everyone decent gifts....and pay my way any time I want to attempt to have any kind of a social life.

It’s no ones fault that my life is like this. It’s no ones fault I cry myself to sleep most nights because I feel so alone and I honestly don’t know how the future can get better. I just don’t want to keep lying here in bed wondering if my life has been a waste especially the last 6 years.