“ … all you can do is try to know who your friends are before you head off to the war … ” – Re
In theory, it’s a nice sentiment, right? But if you’re fighting a chronic disease, it really doesn’t work that way. It seems to me that you find out who your friends are when you’re about six months into a bad flare up. This may seem counterintuitive, but bear with me for a minute. When a flare up first hits, people can often tell that you are distinctly ill. There is a significant difference between remission (or, at least, under control lupus) and the onset of a flare up… people worry. They ask after your heath, if they can help with anything, and so on and so forth everyone is very understanding and sweet. They understand that you’re ill – if you haven’t been too ill for too long, it’s not different from a bad bout of the flu or something that they can at least vaguely relate to.
But then you never seem to get any better. As the doctors mess with your medications. As you battle daily with the flare up symptoms, the side effects of the increased medications, and the frustration and depression that inevitably come hand-in-hand with such debilitation ad nauseum (from the duration not the meds!) ad infinitum. After awhile people just don’t understand anymore, try as they might. They don’t know what it’s like to suffer through that. They can try to imagine, but let’s face it – is it anything like what you would have guessed before you were diagnosed? You probably wouldn’t have even come close. Plus, as you get further into a flare up, some of the symptoms decrease a little, and you ramp up your tolerance so you can get through each day. The problem is, you’re often back into the dreaded “but you don’t look sick!!” zone. Don’t get me wrong. I don’t mean to say that people lose interest, or that they choose to be less supportive or anything of the sort. I think they run out of things to say. They don’t know what they can do to be helpful anymore, so they back off. It doesn’t help that you have good days and bad days – how can they even tell if you’re ill or not or what the heck is going on?
Here’s the real kicker, though. It’s not just that they wander away. You tend to disappear from their lives. No longer do you have the energy or the ability to make it out dancing and partying every weekend. And with all the time you need to spend in bed and nursing your joints, etc, etc, etc, you really need all your awake time (even more, let’s face it) to get the work done that needs to get done every day. So there go the brunches, the after work drinks, the long coffee shop chats. How many times can you decline an invitation before people stop inviting you?
Well, maybe there isn’t a very good answer for that… but at the end of the day it depends on your friends. The friends that are worth keeping around haven’t disappeared when you start to transition back into the outside world. They’re the ones that checked in on you from time to time, or, at least, welcomed you back with open arms – even if you seemed to appear and then vanish again as the flare up roller-coaster-ed around. A true friend is still a friend be it 6 days or 6 months later.
As I make my own way slowly back into the real world, I’m discovering that many of my friends have kind of phased me out. Now I realize that they wouldn’t do this on purpose, but the fact remains that conversations are now awkward. And if I want to join the fun, I have to invite myself along. It’s really frustrating to finally reach a point when you have time and energy again only to discover that nobody seems to remember you exist anymore… With my family far away, my friends were all I had. Turns out that wasn’t really the case. It’s undeniably a pretty crappy situation. Not having any friends definitely does not make this disease easier. You need supportive people. So thanks to my readers, because it helps more than I can tell you to know you are out there! … but it doesn’t change the fact that I’m sitting home alone on a Friday night.
But let me clarify, the point of this entry wasn’t (entirely) to gripe about that fact, it was to point out that it’s easy to dwell on the many, many negative aspects of a chronic disease. But there is an elusive benefit that you might not realize. I certainly didn’t. There’s no better way to know who truly cares about you than to actually need them to care. A good friend won’t let your disease come between you. You may not know who your friends are going into the battle, but definitely will by the time you come back out.
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