Originally published on Thirty on Tap
Like a lot of millennial women, I spent most of my twenties striving for perfection (P90X + Pinterest + grad school + multiple jobs + the Whole 30 + the lob = a hangry, sleep-deprived perfectionist with an iron deficiency and a Master’s degree). But at thirty-one, a chronic pain condition has knocked the snot out of me and not left much room for any semblance of perfection (I rarely wear makeup, my six pack hasn’t come in, I didn’t see Beauty and the Beast in the theater, and I need a haircut badly).
In March of 2016 I injured an ankle, and what should have been your run of the mill sprain, led to a neuro-inflammatory condition that spread from the location of my injury, up that leg and into the next. When my neurologist diagnosed me with CRPS 1, she sat across from me on her roll-y stool and said I’d be on nerve regulators and pain killers for the rest of my life and that what I needed now was a “really strong support system”. I sat there next to my knee cart I’d named Wallace, feet cold-burning, rubbery, and swollen thinking, wait, what? Say that again? I’d never heard of CRPS, didn’t know anybody with it, and I was terrified. All I knew was that I couldn’t walk, my husband couldn’t touch my legs without getting kicked, and that showers, which required the sort of plastic white chair that grandmas use, felt more like water torture than relief.
I don’t know what I thought she was going to tell me was wrong, because clearly something was, but what you don’t want to hear, a couple months after turning thirty, is that, for the rest of your life, it’s going to feel like your feet and legs are on fire. A Google image search later that day only furthered my panic and my husband and I cursed, cried and prayed in our living room. I couldn’t return to work that spring and spent the summer undergoing painful nerve tests, slowly learning what day to day living would look like with CRPS.
Formerly known as RSD, CRPS is a “multisystem condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch” (Juris, Elena. Positive Options for Complex Regional Pain Syndrome (CRPS). Hunter House, 2014), which is a fancy way of saying that I hurt a lot all over but mostly look “normal”. (No, seriously, I hear the following regularly: “But you look ___________.” Fill in the blank with words like great, normal, and fine.)
For the last year and a half, I’ve been on a quest to beat this strange syndrome without traditional medical interventions (pain medicine, nerve blocks, spinal cord stimulation) and, in the process, as I opt for acupuncture instead of opiates, although I’m not great, normal, or fine, I’ve found that CRPS has been a watershed, forcing me to choose the life I always sought, in my workaholic, overachiever way, but never had the courage to claim. It has dramatically altered my perception of self-care and wellness and I’ve come to believe that, with or without some bizarre and painful diagnosis, we should all be taking better care of ourselves. Although that looks different for each of us, what I can tell you from experience is that there’s a good chance it doesn’t mean what you think it means.
Before CRPS, I thought that “self-care” was a yearly vacation to the beach, pedicures with friends, and nighttime Netflix marathons instead of sleep. But what I’ve learned is that, for me, it means saying ‘No’ to anything that drains my energy (i.e., anything involving the word “party,” especially sell-stuff-to-your-friends parties) and ‘Yes’ to all things that replenish it (cats, broccoli, real-deal friends, prayer, weak attempts at meditation, and nature).
CRPS has led to the development of other strange conditions in my body like Reynaud’s Phenomenon and I experience varying degrees of pain on a daily basis. My husband and I haven’t known “normal” in a long time and have experienced both grief and hope in profound and unexpected ways. But what’s been most surprising is how I’ve come to know and love myself through this experience.
CRPS has beaten the striving-for-perfection out of me and forced me to choose between full-on hating my body, what it can’t do, what it doesn’t look like, how it won’t cooperate, and appreciating where it is, what it’s been through, and all it’s capable of. It has taught thirty-one year old me to love myself the way that I’d always hoped sixty-one year old me would love myself and for that head start on love, I am thankful.
If you’re interested in more information on CRPS, you may find the following links helpful: What Is CRPS? | Complex Regional Pain Syndrome Fact Sheet |Living With CRPS