Far too often grappling with a chronic illness is a fight not only for your health but also for your dignity. Many times the medical community can unintentionally compound the pain of those suffering by minimizing their experience or even invalidating them entirely. It can take years or even decades for some patients to get an answer to what is plaguing them, and for some the diagnosis never comes at all. Here are some actual responses I have encountered from doctors in my 15 year journey to getting my diagnosis of Lyme disease. [Read more…]
There comes a point with most all chronic and incurable illnesses where you reach the stage of acceptance. You learn to let go of your unrealistic expectations and find ways to make life with your particular handicaps livable. You surround yourself with excellent supporters, you give yourself an extra serving of grace, and you make your own definitions for success.
And then sometimes there are days like today; days when you throw all that aside for a minute and take the bravest step of all: you let hope sneak in again.
Today I went to a new doctor. We looked over the history of everything thats been tried already, and then promptly threw it all in the trash. We went back to square one and allowed the hope of new options and answers to come alive. We made the choice to go back to the starting line with a new set of eyes and open ourselves up to the possibility that maybe, just maybe, we’ve missed something, or that medicine may have new answers to offer this time around.
And nothing could possibly be scarier right now than hope.
Acceptance is such a healthy phase when you finally reach it. So being willing to let it go, without any assurances that anything will come from it? Thats terrifying. Right now it feels like a huge step backwards – back to a time when my imagination ran wild with possible outcomes and worse case scenarios, when I was bounced from misdiagnoses to failed treatments and back again, and I had no way of knowing what the future might hold. Being willing to let hope in also means letting go of the comfort of having everything all figured out. It means giving up being settled in order to set out on a long and arduous journey – knowing full well that it may come full circle right back to where you started.
Yet that’s exactly what I’m doing. Letting go of it all because maybe, just maybe, there is something better out there for me. Maybe Im clinging to something so much less than I could have if I’m willing to try. And yes, Im fully aware that I might get the same answers, the same lack of solutions, the same diagnoses that will bring the same cycle of grief – all to end up back at acceptance once again. But that’s a risk I’ve decided to take.
So I dropped off most of my blood at the lab (ok not really most of my blood, but it sure felt like it,) and made the difficult commitment to begin the process of weaning off a medication that has been a huge part of my routine for a long time now, so we can start trying new options and see if theres a better outcome somewhere else. In typical fashion, this is an “it’s gotta get a bit worse before it can better” sort of thing. Coming off this particular med is a bit of an ordeal, with a complicated step down regimen and cross weaning process onto the other medication. The side effects of this process alone made me reconsider.
But ultimately, hope is never the wrong choice. I never want to get so comfortable in my acceptance of my condition that I stop being willing to consider Im wrong. Risk is scary, but apathy should always be scarier. It’s simply never time to completely give up; there’s always got to be room for the possibility of hope. And sometimes, on days like today, its time to let that hope out of its hidden corner and let it take the wheel. I have no idea where it’s going to take me, but I know I’m committed to finding out just how far this road goes and where it ultimately ends up, even if thats right back here at the beginning again.
Either way, I’ll know I saw this thing through. And thats worth it.