Living with a disease of unknown etiology is, let’s say, problematic. The lack of a well-defined cause stymies efforts toward a cure, and opens up a gaping void that gets filled, at best, with wide-ranging science, but more prosaically with a substantial amount of speculation, theories, and supplements. This becomes a morass that is incredibly challenging for patients to try to wade through, both intellectually and emotionally, especially because we’re talking about an affliction that includes both cognitive dysfunction and anxiety.
For me, not knowing the cause of my illness is fodder for my tendency toward rumination. Because there’s been no conclusive answer to the question, “Was that why?” over the past nine years, whenever I’ve read something about the illness that contains a fact that’s true of me, it’s gotten added to a mental list of possible hits that eventually – perhaps – did me in. It’s a fairly long list now. Moreover, I don’t even know if all of them were necessary. If I’d missed a few, might I have stayed well? And if there were some like that, which ones were they? After I got sick but before I understood the illness well, I did some dumb things I wish I could take back. Reflecting on all this is a habit that’s unhelpful in improving or curing me and has the side benefit of letting me feel guilty about things that are impossible to change.
So, my history of “if I had known then what I know now” moments -
- My father was diagnosed with Stage IV Hodgkin’s disease in 1978, when I was three. He had enlisted in the Navy more than a decade before I was born, and a later study in which he was included found that people with his job (machinist’s mate on nuclear subs) had double the average risk of developing Hodgkin’s. The cause was theorized to be exposure to solvents, metal dust, or radiation. He survived it, but went through 21 rounds of chemo and two additional recurrences before entering his most recent remission from it in 1982. I wonder if I have some of the same genetic chinks that he has, or if those exposures contributed some still-imperceptible genetic damage.
- He (my dad) is an engineer by training but also a gifted artist and excellent with his hands. When I was small, he built a wonderful set of cubby shelves that occupied one wall of my room. They were made of particleboard, and I wonder if the long-term exposure to so many square feet of it offgassing – not something that was generally worried about at the time, but certainly a problem for me now – influenced my health.
- I was not an athletic child – I was always the second slowest (generally right in front of the class’s overweight kid) when we had to run long distances in P.E. Likewise, during my couple years of youth soccer, I was always placed at left fullback, because I could haul off a good sprint but had no endurance. In later years, at summer camp, I was perennially at the back of our mountain hikes, with the counselors doing sweep exhorting me to push and me struggling to keep up. Was I just terrible at these things because I much preferred to read books and do crafts, or did I have some minor mitochondrial or other issue that contributed?
- I had terrible enamel – my childhood dentist told me it was hereditary – and had 10 fillings by the time I was 18, most of them amalgam. (Weirdly, besides one that developed under an old filling, I’ve had no cavities since then.)
- I took Ritalin for a number of years for ADD – did years of stimulants affect my growth and development in such a way that made me vulnerable to illness later?
- I was always prone to side effects, even with OTC meds. Was that an indication of sensitivity/metabolic issues that someday we’ll understand as an early warning system?
- Chimp, whom I met in 1997, had juvenile rheumatoid arthritis that segued into ankylosing spondylitis. There is some research that indicates that viruses may influence the development of those conditions. Did I catch some immune-influencing stealth virus from Chimp that caused AS in him but something entirely different in me?
- One night in April 2001, I went to bed with clear skin and woke up the next morning with sudden, terrible acne. What tipped in my body at that moment? Were there hormone issues that, if they’d been understood, could have kept me from heading down a path of chronic illness?
- Despite my misgivings about resistance, when the acne hit, I let a dermatologist put me on antibiotics for some months until I could get someone to take seriously the idea that my acne was hormonally motivated. (I was diagnosed with PCOS the next year and given anti-androgen treatment.) I wonder if this decimated my gut flora and thus opened some hole in my immunity that would not have otherwise.
- When we moved to Fresno in 2003, we found out after moving in that our apartment complex had roof rats. They ate the peppers and tomatoes off our plants, scampered along our gutters and inside our roof, and left piles of droppings in our garage, where our car was, the car I spent an hour and a half commuting in a day. They’re not known to harbor any diseases harmful to humans, but if there is a hidden virus that causes ME/CFS, and we don’t know what it is yet – maybe they carry it.
- Early in the diagnostic process in 2004, I underwent a stress test. I still had enough remaining fitness that I was able to make a pretty good showing, but afterward, it took two hours for my heart rate to come back down to normal. I was surprised and didn’t understand why that happened. I asked the cardiologist and my GP about it, and neither of them had any explanation for me. That, in retrospect, seems really dumb – it is obvious to me now that I was sick and my heart was saying so in the form of post-exertional malaise.
- Another thing I didn’t understand early in the disease was the frequent dizziness and vertigo I suffered, with the world pitching and yawing around me. I tried to figure out what activities in particular were causing the dizziness, because it seemed like sometimes it showed up when I had overdone things, but I know now that it’s just a symptom of the illness, and overdoing it was what caused it to worsen.
- I’ve mentioned this before: I didn’t know how to find an ME/CFS doctor early on (and I didn’t think having one was important, because there not being a cure, I didn’t think there was anything they could do for me), and as I’ve mentioned before, I wonder if early intervention might have resulted in me being less disabled than I am now.
- During the summer of 2006 I had a terrible crash and was no longer well enough to go to the office every day. My employer was willing to have me work from home, but only if I went to being a contractor, because they didn’t want to deal with other people asking to work from home (this had happened once before). So I went to contractor status, and in the process, of course, dropped my disability insurance coverage, which was through my employer. I already knew I wouldn’t be able to get any privately, but I figured I was going to work from home a while, regain my strength, and go back to being a direct employee. Things didn’t work out the way I was expecting. By the end of 2007 I was bedridden. I don’t know if I could have gotten the disability insurance to pay out in 2006. I kind of suspect not – I was mostly housebound but could still make it around the supermarket and such. I had to spend another year and a half running myself into the ground before I think I really would have qualified for disability.
- I will always wonder what would have happened if I hadn’t pushed it so much, for so long. Would I be where I am now? No way to say, and there was nobody in my world who knew these things to warn me then…
I know I’m not alone in this kind of thinking. What are some of the moments like this in your life?