A few weeks ago, I blogged about the phases of lupus, and the fact that life with the disease really can improve. It's hard to believe that when you're in the midst of a flare, but as most of us know (but sometimes forget), flares don't last forever.
That said, when I got to the end of the "Phases" post back in February, I felt like I had more to say on the subject. (Quell your jokes, please.) There was an essential piece of the puzzle that I didn't touch on, and that is the ability to know when a flare is lasting too long, and when it's time to speak up.
Okay - so first - you probably know by now that I think it's ALWAYS a good time to speak up. There should never be a moment when you leave a doctor's office thinking, "What did they just say?" If you don't know what the plan is, or what you should expect to happen (with your body, your medication, your test results) from one appointment to another, you should march right back in that office and ask. And once you've done that once or twice, you'll realize there's a huge benefit to asking those questions BEFORE you leave the examining room.
But what if your ambiguity lies in the not-so-concrete world of lupus, or rather, the non-quantitative side of lupus symptoms? How much pain is abnormal? How much joint swelling is alarming? How do you know when enough is enough? Deciding that whatever level of symptoms you're experiencing is no longer acceptable is a tough one. Primarily because there's a lot at stake - pride, confidence, comfort level, disruption of routine. But if you can look at it as though your calling out the disease, rather than crumbling under pressure, it makes a world of difference. Look at it as though your disease has gotten out of control. It's not that you can't necessarily handle it anymore...it's that lupus is unruly and undisciplined, and she needs to be dealt with. And by someone other than just you.
I say share the burden - let the doctor know the current treatment isn't sufficient, and brainstorm together on options moving forward. If you never say something, the doctor's never going to know to do something.
In my early years with lupus - I could never figure out how long to hold out, but now I know. Not that long.
If you feel like something's wrong, it probably is. And if you think you're at your breaking point, you probably are.
And as you muster up the courage to call out that disease to your doctor, feel free to brush up on Chapter 4 of Despite Lupus before doing so...learning from the error of my ways is sure to smooth the process!