Having been a part of the chronic illness community for about a year now (or at least on the fringes, watching what goes on), I've come across many a list of what not to say to someone who is chronically ill, or things that chronically ill people don't want to hear, etc. Shoot, that's what Chronic Illness Cat is all about! I think some of it comes from the fact that people with chronic illnesses feel marginalized and discounted by society's understanding of and relation to sickness and the mainstream attitudes that accompany it. I mean, here in America, sickness kinda makes us uncomfortable. So does poverty, pain, abuse, disease... anything that's not happy and shiny and new. Unless it's particularly awful and heart-rending, in which case we'll obsess over it. (This takes me back to my very first post in which I muse about the pursuit and idolization of perfection in society and how that has affected my thinking.)

So with that uncomfortable feeling as the backbone of this attitude, I would say that the muscle and flesh of it is the expectation that all sickness/disease is acute. That is, you get sick and then you get better. Even those diseases that we have claimed as poster children (think breast cancer or AIDS) are of a similar vein; either you get better or you die. There is a definite "end", a trajectory that you can pinpoint your particular location on. Well, with a chronic illness like fibromyalgia or UCTD... there is no trajectory. There is no "end". And that brings me to the point of this little musing/rant.

I get annoyed sometimes by the things that people say when it comes to my illness or my symptoms or how I'm feeling physically. I mean, I get that it's the elephant in the room, since it's kinda taken over my life, but one of the things that irks me a little is when people ask how I am, then tell me that they hope I feel better soon, or better yet, "get better". I'm always tempted to take the easy way out and just say "fine", but I realize that this would only feed the monster. Once I say "fine", the next time that I'm actually honest and say that I feel pretty horrendous the person is going to wish me well so that I can go back to being "fine".

I'll let you in on a secret. Now that my life has altered so drastically, I don't actually mean I feel "fine" when I say that. It just means that I don't want to bring you down by telling you that I feel awful, because you either are made uncomfortable by my physical misery or you will pity me (which is a completely different animal from the genuine compassion that my support system exudes... which is why I'm lying to you and saying "fine", because you're clearly not in my support system.). Also, it could mean that I just don't have the energy to explain why I'm not feeling fine, and what exactly is wrong with me, and that I'm anticipating some sort of advice that I don't feel like dealing with or dodging. This is especially true for very religious/in the medical field/a natural health and healing advocate/some combination of the three/good god help me if it's all three people. Another possibility is that I sense that you are merely making polite conversation and you don't really care how I'm feeling, so telling the truth would only a.) make things awkward, and b.) imply a level of friendship and confidence that I'm not willing to bestow on the likes of you.

I guess it's just that, if you don't know me, then I'm obviously not going to go into gory detail unless asked. (Hey, sometimes it happens.) If we're only acquaintances, then I'll probably go with "fine". But if you know me, even if we're not close or you're not a part of my support system, then you should know that I'm pretty damn sick. You should also know that it's not going anywhere, so wishing me a "get/feel better soon" is basically just blowing hot air up my butt. I'm not getting better, folks. I might be sustaining, sometimes, but barely. I feel like I'm getting worse, just from the sheer numbers and scale of my symptoms. My life is hard, and hearing "feel better soon" feels like a casual dismissal of everything I work so hard to do. I'm upright, and maybe even dressed. Do you know what an accomplishment that is? So telling me to "feel better soon" is just like... so minimizing. Taking it and scaling it down to the level of the common cold. Like telling a double amputee that you hope they feel better soon because you twisted your ankle last week and you totally know how they feel.

It's just that... I mean... "feel better soon". If you know me at all... then you'll know that I won't. I'm not going to. And I don't want to be all Negative Nelly here, but I'm just speaking from practical experience. I mean, yes, we can all hope that I feel better, that my symptoms recede, and that I can live a normal life again, but... I guess I've kinda given up on that. I mean sure, it'd be nice, but my focus has shrunk to dealing with the immediate present, to getting through each day. I might take things a week at a time, but that's about as far out as my scope goes right now.

And you know, I'm sure it comes from a place of "I don't know what the heck to say to you" and "I genuinely care about you and wish you the best". It's just the way that I'm taking it. It's not how they mean it. I know this. But it's still irritating... yet I choose to just let it go, because I know it's on me, not on them, to navigate the world with this handicap. I don't ask them to bend to me, watching every word they say. It's unrealistic and unfair. So I'll just come here, let off the steam, and then make my merry way back into the world. I mean, shoot... I didn't know a thing about chronic illnesses or chronic pain until it smacked me upside the head, so how can I expect everyone else to know and understand what I'm going through and where I'm coming from? There's just no way.

2 thoughts:

Post a Comment