What 'Triggered' Actually Means When You Live With Chronic Illness
‘This triggered me.”
“I was so triggered when…”
Snippets like this float around me every day. And I cannot imagine what they mean. It is as if the English language that I speak is different from what my age group speaks. Granted, I’ve always loved old words and filled my speech with flowery language at times, the same way Anne of Green Gables writes her first advertisement. And I’ve never had a problem with this. I have little interest in pop culture, and my speech reflects that.
However, now I am running into a severe disadvantage. I suffer from chronic, almost daily, migraines. I have triggers that can cause these migraines. But telling people about these triggers has never been something I am good at. Even amongst my extended family, I have told few of them how light, sound, exhaustion, stores like Walmart, the smell of tires, certain candles and many more things can cause migraines. How do I explain it to my friends, who use the term “triggered” for something I do not quite understand?
I am like a slingshot, drawn so far back I am almost at my breaking point. I have been in survival mode for months, wearing hats, not going outside unless I have to, sitting in the dark with ice so often I am surprised I am not growing my own permafrost. But I don’t often tell my friends how bad it really is. They’ve seen some of it, and those bits are really bad. But what they don’t understand are the day-to-day things. The fact that when I don’t want to walk a distance, telling me to suck it up only makes me feel so much worse. Because if you know I don’t want to walk, then I have to be bad enough that I don’t think sucking it up is a smart option. Most of the time I try not to mention how hard it is to get through the day. And if I do, it seems I often don’t use the right kind of language.
To me, “I can’t/shouldn’t/don’t want to do this” is exactly what I mean. To some of my peers, it is a complaint, something to agree with or something to just nod and observe. And if I ever say “I am exhausted” to the wrong person, they will only agree that everyone here is exhausted. We are in college, after all. So I find myself more and more shutting up. Not saying anything specific, because I don’t want to be misunderstood. Again. I don’t complain. I make a point not to mention the lights, the noise, the fact at times when the world is tilting around me I can’t always tell if I am the one tilting, or if it is just another wave of dizziness.
It isn’t like I haven’t tried to explain it to some of them. But I’ve lost track of who has understood what. So I don’t go into it again. Especially when I feel like I’ve been run over by a two axle semi-truck. That is the last moment I want to talk about triggers, or explain why I want to avoid something.
When I am forced to explain – usually in the moments when all I want is a quite, dark place – I tend to get snappish. If someone gets on my case about why I am avoiding smells, which has happened plenty of times, I have to force myself to try to explain it to them. Even if my first instinct is to snap. To pull away. To protect this crumbling body of mine. I try to tell them that certain scents are triggers for my migraines. I leave out the fact that the moment I step into any big store, I almost always start getting a headache from the lights and scents. This fact is what leads me to want to flee most stores upon arrival. It is for this reason I now have my groceries delivered to me. It is better for my health that I do not put myself in more situations than I must that could trigger a migraine.
You might be wondering why I would work so hard not to get a “headache.” It is OK if you do not understand the difference between a regular headache and a migraine attack. If you do not have severe migraines, then you will not know why I do my best to not meet up with any triggers. Migraines are events. They cause my whole body to shut down in different ways. One migraine, which lasted for two months, left me in a state of brain fog so great there was little else I could do except sleep. My more recent experiences cause parts of my body to stop functioning correctly.
I lose the ability to lift an arm.
I struggle to spell.
I start stuttering.
I wobble when I walk.
I become so weak that it is dangerous and very difficult to carry anything made of glass.
I am overcome with unwarranted exhaustion.
I have trouble tracking objects with my vision.
I have trouble remembering things. Like where I live. The names of those I am with. What I was doing two seconds ago.
Of course, the brain fog is still generally there as well, placing a haze over everything.
I know I don’t use this the way others do. But I just wanted to let you know that when I get triggered, it is an event that does not stop sometimes for days, weeks or months. And this makes it very hard to deal with everyday life. It is difficult to know how to make my peers and friends understand that the things I do, the things I say, are only done when I absolutely must. That is why I might not mention something could be a trigger one time, and then avoid it later on. I don’t like voicing my needs, as they never seem to be the important thing, and I even less want to sound like I am complaining.
Language is such a tricky business. The next time you are using words like “triggered,” take a step back and think about what you are actually saying. There is always the possibility a word doesn’t mean what you think it does.
We want to hear your story. Become a Mighty contributor here.