It means that if your doctors don't work together as a team, you don't have a chance.

It means that when you ask for your chart and get it, you find out what your doctors really think of you. And it may not be pretty.
It means relying on doctors to follow through on their promises, and not have their egos take hold- when they're over their head, they need to say so. It means relying on yourself to know that someone's stringing you along. It means cynicism. It means that you need to be proactive. It means that it won't get better unless YOU do something about it- although YOU feel like curling up in a ball and crying.

It means that chronic pain is dismissed. That you're seen as just another whiny patient who the doctor can't cure. It means that you may look as bad as you feel. That weight gain from some drugs happens- and getting it off is just another thing that you can't afford to focus on during acute flareups. And that weight is unhealthy- you know it. And sometimes, my knees aren't happy carrying the extra 20lbs.

It means knowing the pharmacists by name. Knowing which one is going to be helpful- and for whom it's just a job.

It means dealing with doctors who treat you like crap. Others who say nice things to your face, but whoa- what did they just write about you in your chart.

It means you never know what's coming. Will today be the day that the condition flares and you can't predict it, and the thought's always there, lurking somewhere in the recesses of your mind.

It means your work may be affected. It means that you may live in fear of losing your job. It means that you need that job to keep your insurance- if you even are lucky enough to have insurance through work.

It means that if nothing flares up, or changes, even with insurance, I spend over $120 on prescription drugs per month. That's $1340/year if no other Rx meds are added to the mix. It means that when I travel, I have so many prescription bottles in my bag that it takes up almost a whole pocket of my backpack.

It means being told that your coping skills aren't good enough- and it's all in your mind.

It means that I will never get a chance to get back the last year of my life- lost to chronic illness, pain, tears and hospital bills

It means that at the current rate, I'll be paying off my medical bills for longer than I will my new car.

It means that sometimes I get tired of fighting for myself and throw a pity party- but no one wants to come. It's lonely being the only one at a pity party.

It means explaining that unfortunately, you can't make x, y, or z- although you've looked forward to it for a long time. And sometimes, letting other people down hurts more than you care to admit. Or would admit to anyone other than those whom you know are your ally.

It means finding out who your friends really are. And loving them. It means that they know that you're trying your best, and don't take your absence as a slight if you can't make it at the last minute. And you appreciate that more than you could ever let them know in words. So, you send cards, thank you notes, and other things to let them know how much they mean to you.

It means that if your partner isn't supportive, it's going to be a long ride.

It means that I know all of these things to be true.