Just a Haphazardly Thrown Together Rant

I kind of just need to get some things off my chest and share them with people who actually have a clear idea of what I’m going through. I’m not really looking for medical solutions right now, just need to rant.

I’ve had this illness since I was 16, and I’m 22 now. I had a tendency to get sick for really long periods of time even before that though, probably since I was 12. I had to drop out of high school and since then have only taken one in person class. I barely even remember anything before I got sick. It feels like this is my only identity because I never really got a chance to grow up on my own. I don’t really have dreams or aspirations anymore. I know I had them before but most of them have been crushed by the sinking reality that no matter how much I want something it will only be possible due to factors beyond my control. It’s like I’m wandering around in the dark with no idea where I’m headed or if I’m going the right way. Maybe someday I’ll see a light, or someone will reach out and rescue me but it feels like nothing I do makes a difference.

I know that’s not fully the case. I can at least try stuff that might work, but I’ve struggled a lot with believing anything will actually help me. The truth is I don’t want to manage my symptoms. I just want to be better. Even when I’m not deep in depression there’s a sense that I’d rather be dead than have to manage this for the rest of my life. I’m so fucking angry so much of my life has been taken from me. I know it doesn’t make sense, but compromising on what I want to do in life feels like I’m freely giving up something that should be mine. I get a feeling in my chest like something is being pulled out of me every time I have to cancel meeting up with my friends, or miss going out to dinner or going on a vacation with my family. Even if I woke tomorrow perfectly healthy I’d never get any of those things back.

My condition has worsened recently with some changes to medication, which has exacerbated these issues. At this point I spend a lot of my time just lying around. My energy is so low that activities like reading a book or playing a video game feel too strenuous. Even particularly interesting tv shows or YouTube videos can be too much. It messes with my sense of self worth. I wonder if maybe I’m just lazy. That doesn’t make logical sense, half the reason I’m in this mess is because I overtaxed myself trying to power through the fatigue. But when I see someone else accomplish even a fairly routine task and I think about what it would take for me to do something similar, it feels impossible, like I’m so far behind that I couldn’t function as an adult even if I was magically cured.

I joined a support group for CFS before, but there were mostly older people there, so I was hoping to get some perspective from another young adult on how the illness can shape you. Maybe it’s selfish to think this way, but I’m a little envious of others who at least got to live their lives for a time before getting sick. They went to college, had jobs, and some got married. I remember taking so many extra curriculars in elementary and middle school, and being so passionate about so many different things. All of that fell by the wayside as I got sick and no longer had the capacity to do these things. I wonder what that kid could have grown up to be like if none of this happened. Somehow after all these years of illness I still haven’t progressed past denial.

Sorry for the messy rambling, just needed to get that off my chest. I’d love to hear other people’s stories if you’re comfortable sharing yours.