I can survive chronic pain, but how do I live with it forever?

I’m 19 and I’ve lived with chronic pain for about 6 years. I have fibromyalgia and CRPS, and lately I’ve been struggling with the idea that there may not really be an “end” to this.

I can still be happy. There are so many things I love, people I care about, places I want to see, and little things that genuinely make life feel worth living. I’m actually happiest when I’m able to take life one day at a time, slow mornings, rest when I need it, doing things at my own pace.

But the problem is that the rest of life doesn’t always allow that. I’m in university. Eventually I need to work and support myself. There are appointments, responsibilities, relationships, finances, and all the normal demands of being a person. Whenever I try to keep up with a “normal” life, my body seems to make me pay for it.

One of the strangest parts of being chronically ill this young is that sometimes I feel like I’m already living the life of an elderly person. I literally take some of the same medications my grandparents were taking in their 90s, and I find myself relating more and more to a lifestyle built around pain, medication, doctors, appointments, conserving energy and recovering from ordinary activities.

Meanwhile, I’m 19. I’ve just started university. This is supposed to be the part of life where the world feels completely open, where you’re figuring out who you are, going out, travelling, studying, building a career and feeling like you have endless possibilities ahead of you. Instead, sometimes I feel like I have more in common with someone at the end of their life than other people my own age. There’s a strange grief in feeling like I’ve skipped over a stage of life I was supposed to get to experience.

I’ve been doing this for years, so I know that technically I can keep going. I just don’t know how people come to terms with doing it indefinitely.

Sometimes I even catch myself wishing my illness were something with an endpoint, not because I want to die, but because the thought of having to fight my body for another 10, 20, 40 or 60 years feels impossible to comprehend. I want a life, not just an endless cycle of pushing myself, crashing, recovering, and pushing again.

For those of you who have lived with chronic pain or disability for decades: how did you build a life that actually feels sustainable and worth living? Did you eventually stop measuring your life against what healthy people can do? Did you change careers, expectations, routines, or the way you think about your future?

I don’t really need to hear “stay strong.” I think I’ve been strong for a long time. I genuinely want to understand how people make peace with this and create a life they don’t have to constantly survive.