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Monday, April 19, 2010

“ … all you can do is try to know who your friends are before you head off to the war … ” - Regina Spektor, “The Call”

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.


  1. Gosh, you said that all to well. I have been through that and it hurts like hell. You learn to adjust, do things as needed. Maybe even push yourself to do things. Sitting alone (not just friday) is hard, I do it a lot and I hate it, but it is just another side effect from our lovely disease. Channel those thoughts into a positive by helping others understand..
    thanks for your hugs... i needed it!!

  2. thanks :)

    i must admit that i am definitely guilty of pushing myself into going out and doing things in the name of trying to keep friends around when i should be staying in bed... :( oops.

  3. I just discovered your blog and am looking forward to reading more!

    I have been living with my autoimmune conditions (one of which is Lupus, in varying degrees of severity) for the last 17 years...and I JUST turned 30! I can really relate to your post. I have disappeared from many friend's lives over the years because of needing to "pull back", and conserve what little energy I've had, at times, to get the work done. Especially frustrating because I am a social person and get depressed when I have to frequently say "no" to fun things.

    Most of the time I don't look sick, and so explaining what's going on with my body is a huge challenge. Sometimes it feels like it takes more energy to explain than to just pretend I'm feeling fine. That has definitely led to me going out, socializing, whatever..when I should have stayed home :) I find that it's hard for people to relate because "you're so young"!

    Good, true friends are out there, and I am lucky to have a few in my life.

    It's so encouraging to me that you're a grad student pursuing your goals despite the challenges of Lupus (it took me 5 years to get my undergrad degree, but I did it!).

    Sorry for the super-long comment...All this to say,thank you for your openness and willingness to share your experiences. Remember to take care :)

  4. Hey!! Thanks so much for the comment, you totally made my day!! :)

    As I'm sure you saw, I'm new to the blogging world. I can't believe how much it helps to hear from other people suffering through the same things! Thank you!


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