I received tons of practical and rational advice like on this thread, but ultimately the only thing that worked was a strategy that really leaned into who I am as a person and didn't force me to fight against the current. I became single-mindedly obsessed with solving a neglected problem.
It certainly helped that ME/CFS was personally affecting me, though on its face it seemed laughable that someone like me could actually do anything concrete to solve ME/CFS. Everyone I talked to kept recommending that I get involved as a patient "expert" or advocate, but I eventually realized that just "helping out" wasn't enough to keep me motivated. I wanted to solve the damn thing. Nothing less would hold my interest.
It was a laughable thought, honestly. At the time I was still on extended sick leave from my university, I only had 2 biology courses under my belt, and the prospect of working in a wet lab was beyond my capability. I recognized how arrogant it was to think I could make any actual headway towards solving the mystery when all the PhDs with their able bodies couldn’t.
The most useful thing, on the advice of my therapist, was just to ignore the reality of the situation, lean into my stubbornness and problem-solving determination, and see how far I could possibly get. The time was going to pass anyways.
I actively avoided making a long-term plan, knowing that it would just look impossible on paper and probably wouldn’t work out that way anyways. Instead, I just threw myself into it as if I was figuring out how to fix a technical issue. Focusing on one smaller problem at a time, troubleshooting, seeing what new information each attempt gave me. I think this framing was really helpful, because it was no longer about me and my potential for failure--I didn't get frustrated when I couldn't accomplish a small task, my brain just interpreted it as part of the troubleshooting, and I had to find another way to make things work.
Early on, this process resulted in a bunch of (retroactively embarrassing) attempts to synthesize existing literature into some grand theory. But eventually I decided that in order to understand why the science wasn't going anywhere useful, I needed to get involved in it. That's when I reached out to a local research group to become an intern.
From there it was just a series of coming up against a problem and figuring out how to move around it.
- I realized that the survey data available through the internship was useless to give me any mechanistic insight, so I begged to be involved in some of the projects that were collecting blood samples.
- I needed a college degree before I could be hired as a research assistant, so I finished a major in philosophy because those classes didn't include 3 hour labs and I could feasibly manage the workload with accommodations.
- I needed publications in order for anyone to take me seriously, so I finished a paper as part of my internship.
- I needed money and work experience after I graduated, so I sent out emails to nearly every PI in my city asking if they would be willing to take on a computational research assistant.
- I was getting fed up spending my time on projects that were only remotely related to my field of interest, so I told all my bosses and coworkers that I was really interested in ME/CFS and Long COVID and eventually someone introduced me to a PI that was doing computational analysis for Long COVID.
- I still wasn't getting enough time to work on my projects of interest (and I wanted more freedom to actually take charge on the analyses) so I applied to grad school.
None of those solutions were close to perfect, but it was way easier to make choices when I was just trying to solve one immediate problem after another. And still, at many points there was tons of frustration, tears shed, and dealing with the consequences of overworking myself. But ultimately the stubbornness of wanting to solve the problem was strong enough that it could keep pulling me back. It even made it much more possible to endure the boredom of all the things that were annoying/monotonous/seemingly pointless but logistically necessary to solve the problem.
Another friend ended up studying ecology simply because he got really pissed about all the people throwing trash in the creek near his home. And another one is now very involved in local politics after realizing that his workplace desperately needed safety protections and that it was never going to happen until they unionized. The impulse of "well it looks like nobody else cares about solving this problem so I guess I'm going to do it" is an extraordinarily powerful one, especially for people who already have a knack for problem solving.
It's counterintuitive, but zeroing in on a big problem is a lot more manageable psychologically than trying to arrange a life for yourself. You'll be surprised how often various pieces will just fall into place even if you're only prioritizing the problems--social connections, jobs, and a sense of purpose were all possible to weave into my crusade without putting that much extra effort into arranging it. Very often the problem finds
you, you just need to let yourself get pulled into trying to solve it, even if it seems impossible.
I hope some part of this was useful instead of me just babbling!