I’m finding myself more and more in this weird middle ground between ‘normal’ (whatever that means) and ‘sick.’ As in, I definitely don’t feel healthy and whole physically, but most of the ways I am affected are not really visible, and are mostly manageable most of the time.
I guess that’s kind of the definition of invisible illness?
It is a really weird place to be, though. And it’s hard to describe why. For most people, they get a headache now and again, but they know it will go away eventually. They can rest now until it goes away because the point in the future at which it will be gone is not too distant. Or they can push through and handle it, because again, that glorious point in the future when they will feel well again is not so far, so they can push through until then. Or if they’re going short on sleep one week and especially tired, they can keep going and push through, because they’re not so tired that they’ll lose productivity, and in just a few days they’ll be able to catch up on sleep. And it will only take a night or two to feel caught up.
Me? I try to track symptoms and I actually calculated out that I have a headache on average about 20 out of 30 days of the month (with occasional migraines for good measure). That number actually seemed lower to me than I expected (and I know so many people out there have more frequent and/or much worse headaches or migraines), probably because I spend a lot of the time with a low-intensity headache I’m somewhat used to ignoring and sometimes forget to record. And when I start getting a more intense headache, I end up having more intense spikes around once a day for pretty much a solid two or three weeks, or at least a few days. So, there’s really no telling when it will end once it starts, or how bad it will get. But that means I don’t usually stop just for a headache, unless it’s really bad, but at the same time I feel more attuned to certain potentially triggering stimuli, and it’s hard to figure out how to explain to people something that makes sense to me but probably doesn’t for them.
For example, while I was on vacation with my family, a group was planning to go on an afternoon hike. I had already been on one fairly strenuous hike that morning, it was very sunny, and I had a headache that had been sort of heading into pounding nausea territory, and I was trying to decide whether I could handle another hike. I had done what I could to ease the headache, and it had stopped getting worse, but I wasn’t sure yet whether it would get better, hold, or start getting worse again once I started hiking in the sun. When someone noticed I looked a little sick and I mentioned I had a headache, they expressed (natural) concern over me joining on the hike (I was still undecided).
I didn’t know how to explain right there that I had been hiking on almost-this-bad headaches all week, and that if I wasn’t willing to hike with headaches, I’d cancel a lot of hiking plans. Heck, I continued backpacking when I got a migraine on the third day out of a five day trip (which was a very not-fun day, but I didn’t have much of a choice but to continue given where on the trail we were). Writing out this situation with the hike on family vacation now, the obvious answer seems to be skip the hike. Particularly since I had already done plenty of hiking, even if it wasn’t with that group. However, I ended up going on the hike, and as it turned out, the headache diminished enough that I had a lot of fun and was glad I went.
But then I contrast that with moments where I have a low-grade headache, and I’m hanging out with a small group of friends or family, and they put on music just a little too loud and with a heavy backbeat. And I’ve already become known in my family for always wanting music or movies quieter “to protect my ears” (my research intersects with hearing loss research), and among at least some of my family I have felt like the butt of a joke on that. So I feel bad asking them to turn it down, or change the type of music, and feel like I should be able to handle it. But I can’t always handle it, and it seems like such a small thing to ask of them. But if I’m willing to handle hiking with a headache, why can’t I handle hanging out with friends or family and their music with a headache? The two seem very different to me, but I’m not sure why. Maybe because I’ve always generally had a hard time with loud noises, with or without a headache.
That’s just one example of where I feel not-quite-normal but not quite sick exactly, or at least not always. But it seems like there’s always something. I still haven’t really figured out my limits, but I don’t know how to explain to people that if my weekend is too busy, I’ll spend the whole next week or possibly longer recovering. Not in the sense that I’ll be in bed all day every day for a week or longer (although there are people out there who I know experience that), but in the sense that I’ll be tired enough that whole next week that my productivity will be affected, and that it’s a good thing I’m married and we drive most places together because I might not be able to safely drive myself, and that if I keep going as usual it will take two to four weeks to start feeling not-bone-tired all the time, and possibly even semi-rested again (which is usually about as good as it gets anyway). That’s… do-able, even if it’s not ideal. But to add to that, when I’m that tired I’m that much more likely to get serious headaches, and it’s harder to handle the joint pains, and I seem possibly more likely to get restless at night. And all of that can keep me awake at night or at least keep me from getting deep sleep, so it turns into a vicious cycle.
But although all that’s annoying, most of the time I don’t quite feel sick enough to mention to people, or to ask for help. If I’m sitting at work with my heating pad or wearing tape or a brace on a joint in public, I don’t like people pointing it out. I don’t like the “aww, poor you” reaction, and I don’t like having to explain. I particularly don’t like having to explain when I don’t have an answer for what is wrong or when I’m working out in spite of it — the look I’ve gotten when I explain my elbow is hurting but I’m rock climbing anyway and no I haven’t seen a doctor about it recently… But then there are the random moments where I think for just a second “if they just knew what I was experiencing right now…” and then instantly feel guilty.