Emotional Shrapnel

If you have done any amount of research of Fibromyalgia you have inevitably stumbled across the lists of things not to say to someone with chronic illness. Here is hopefully just a little insight into some of the bizarre reactions we have to what you thought was a compliment.

You don't look sick (if you haven't at least absorbed that one you aren't listening anyway, and this isn't for you.) 

Every person who has experienced the life-shifts of chronic illness can relate to these often well intentioned but completely misguided attempts to communicate and the resulting gory bits that remain after we've gone nuclear. 

In the early stages of our illness when we are grieving and feeling entirely misunderstood there are a lot of sharp corners and hair-triggers. Maybe over time we find these comments less inflammatory or we just don't care as much, but there will always be triggers, because we will always be speaking a language most people can't understand.

Hopefully we learn along the way how to recognize our own triggers and maybe how to desensitize them a little, but occasionally still, we run into some that despite our best efforts are peppered with sharp bits we can't seem to avoid, sometimes they suprise us just as much as you. 

Here is a sentiment that at the core I know is meant to be sympathetic, but that I have always had a very bad knee-jerk reaction to:  hate that you're sick, and I can't do anything to make you better. Or any version of that. I know what you're thinking; that's ridiculous how could I find fault in that? But here's the thing(s): most of the time this is an empty sentiment, people don't mean it really. If you were like oh, but you can: insert list here, most people don't actually want to help all that much, but that's not even the reason I hate it most, because let's be real... we all do this. No, it's more complicated than that. You see, people like to solve problems, they like to fix things, and we (at the moment at least) are an unsolvable problem, we cannot be fixed. Only accepted. So when people say this, what they often mean even if they don't realize it at the time is; you are making me uncomfortable with your problems that I cannot solve, and so you have made me feel bad too. And despite how crazy you might think I am, many relationships fail on this principle alone. The healthy person begins to resent the sick person for being sick and trying to make them feel their unique pain and the sick person begins to feel guilty sharing their problems because they know the healthy person can't do anything about it. So the sick person hides their pain even lies about it which makes the sick person resent the healthy person for not being able to hear something without feeling personally responsible for the the outcome. So you see; that statement even in innocence will make a sick person feel guilty and pressured for not allowing a healthy person some measure of control. And even further beyond that; probably only in my twisted sense of logic, is the bothersome amount of ego people have that they believe they somehow have the power to fix you when even you don't. Which is just plain insulting. Can't I just tell you a thing without you feeling some compulsion to do (by do: I mean talk about doing) something about it? And that is the most frustrating thing, people are so trained to have an opinion or express a solution that they cannot just hear you, they must act or express their desire to act. I want to tell you about how I'm actually feeling when you ask without you becoming affected and then blaming me for feeling impotent. You think I don't feel just as frustrated when I know exactly what I'm feeling and can't do shit to change it? I didn't intend to make it your problem, I just wanted to tell the truth, you're helping by just letting me say what's actually happening without any expectations of a solution from you.

Appropriate responses:  

Well, shit.

Um, so is this like a leave me alone moment or distract me moment?  

Your brain is an asshole, want to bitch about it?   

Oooh look, a grande two pump vanilla latte... Jk. Maybe. 

I still find that the sentiment of wanting to fix me frustrates me on a level I don't even fully understand, and with any chronic illness don't be too surprised when we occasionally explode from a seemingly innocuous statement. You probably just stepped on an emotional land mine you couldn't possibly see... If you're really awesome you'll ask us wtf just happened and calmly wait for us to explain, possibly after a snack or a nap -just in case. 

Just a little bit of insight into why we melt down when all you were trying to do was be nice or helpful.