As I sit down to write this post, I’m on edge. I’ve come down from a high of hope, and the crash is harrowing every time. I intended for my first post about the effects of chronic pain on my life to be a positive and uplifting one, but today that would be inauthentic, and you and I both deserve better than that.
You see, since I was twelve years old I have fought this battle, this war, where my body is attacking itself and no one can tell me why. Over the years, answers have trickled in. Complex regional pain syndrome, scoliosis, social anxiety disorder, fibromyalgia, degenerative disc disease, cervical spondylosis, then more personal issues like ovarian cysts, vulvodynia, vaginismus, pelvic congestion syndrome, and interstitial cystitis. All this, plus a condition where my liver stores fat, called non-alcoholic steatohepatitis. Twelve separate diagnoses, given by nearly as many doctors over the course of sixteen years, and every doctor has stated that that they are most likely all linked to some underlying cause.
Those of you living with chronic pain and chronic illnesses will understand the cycle of the past sixteen years well. Each new round of testing brings the promise of a new treatment. And each new treatment brings the promise of relief. But all too often, the tests come back negative for whatever new thing the doctors hoped to find, and you are left with no explanations. That’s when you crash. You crash because you dared to get your hopes up, dared to think that THIS would be the test that made everything make sense again. And for those of us living with invisible illnesses, you dared to believe that THIS would be the diagnosis that no one would scoff at or claim was all in your head.
Highs and Lows
Yesterday, I had that high. Before my appointment, I gave myself a pep-talk; “Samantha, you are not walking out of here until he agrees to help you get your pain under control!” I may have looked like a lunatic, sitting in my parked car and speaking firmly into the visor mirror, but I’ve been called worse. My little speech bolstered my confidence, so in that appointment, for the first time, I was FINALLY my own advocate. And it WORKED. The doctor listened, respected my opinions, adjusted my medication, had more tests run and referred me to a specialist. He also delivered some great news – for the first time in 5 years, my liver was working properly! After years of struggling to get my liver enzyme levels to normal range, I had finally achieved it! I slayed my dragon and left that appointment feeling like I was on top of the world.
He ordered blood tests for inflammatory markers that could indicate Systemic Lupus Erythematosus. Lupus is a very serious condition, but it would explain the new and debilitating symptoms I have developed in the past eight months, and for the first time I would have a diagnosis that no doctor would tell me wasn’t real. The idea of finally having an explanation had me walking on air.
Today, the tests came back. They were negative. Completely. All the way through. And now I am back at square one. No answers. No idea where to look next. No relief. And, damnit, it’s hard! I hold it together the best I can for my family, for my beautiful little girl who just wants a mommy who can play with her, for my mother who blames herself every time I’m in pain because she thinks her genes are at fault, for my husband who got thrown into the roles of sole breadwinner, caretaker, and housekeeper because of my pain. And as I sit here typing this out, I’m doing so through tears silently streaming down my face because I have gotten so good at holding it together that I didn’t even realize how much I needed to fall apart.
I Hope You Dance
As I’m drying my tears and listening to my daughter sing “I Like to Move It” through the monitor while she’s supposed to be napping, I’ve realized something that I should have seen years ago.
This is a dance, and it’s one that almost everyone with a chronic illness or chronic pain can understand. I hope that, in sharing this story, I can help at least one person reading this realize they are not alone. Every journey with chronic illness is different, but there are pieces which tend to be universal. The diagnosis dance is one of those pieces.
As for me, it’s time to take a deep breath, lift my chin, and take the next step. I’ll be gentle with myself, and remind myself that it’s okay feel let down and disappointed. Then I’ll pick up the rhythm, start swaying my hips, and get back into the dance. Because pain or no pain, answers or no answers, I am always worth fighting for. And so, my beautiful readers, are you.
So let’s dust ourselves off, get back out on the floor, and MOVE IT!!!
I’m sharing this raw, personal, piece of my life with the hopes of touching someone else’s. If you’re living with chronic illness or chronic pain, please feel free to reach out to me at any time. If someone you love is living with a condition you don’t understand, please read my post 3 Things Someone Living with Chronic Pain Needs You to Say and don’t hesitate to ask me for advice.