I got my first tattoo when I was 18. I was diagnosed with systemic lupus erythematosus (lupus) when I was 19. Next month will mark the ten year anniversary of that first tattoo, and I'm coming to realize the important relationship between my body modifications and my chronic illness. The following is my reflections on that relationship.
At A Glance Author Undead Molly Contact Undead [email protected] When N/A Artist Bald Bill Henshaw Studio Yankee Tattoo Location Burlington, Vermont Lupus is an autoimmune disorder - this means that I am constantly under attack from my own immune system. You know the "good guys" in your body that help protect you from viruses and infection? My "good guys" are well intentioned but indiscriminate, attacking my own connective tissues, nervous, and internal organs. Lupus treatments work sporadically at best which means I cannot predict how I will be feeling a week from now, a month, a year, etc.. All of this has left me with a real feeling of loss of control. My own body has betrayed me and much of my life revolves around the crazy roller coaster of flare-ups and remissions. Sometimes I am fine, but more often I am plagued by symptoms like joint pain, fatigue, vertigo, and fever. Even when the disease is not active, the side effects of my medications are still taking their toll on my stomach and skeletal system. At 27 I have osteoporosis!
Being tattooed helps me in three ways.
First, it gives me back some sense of control over my body. When we're laying down ink I feel like I'm planting a flag to let the disease know that I'm still here and I'm not going to let it take over this body we share.
Second, the tattoos are a reminder of Who I Am. A reminder that while I will be a lupus patient for the rest of my life, first and foremost I will always be Molly. I need to be vigilant in protecting my character and unique spirit against the threat of defeat, despair, and disappearance under the weight of incurable chronic illness. My tattoos are a daily visual cue to be strong and true to myself. I was diagnosed at a young age, only 19, just when your character is beginning to blossom into the form that will keep for life. It is my suspicion that if I didn't have my tattoos started before diagnosis that I would have lost something important. I might have been overwhelmed by victimhood and confused illness with identity as I have seen others do. All of my tattoos are original designs rich with symbolic and literal meaning, conceived by me and executed by my terrific artist.
Third, it has taught me a lot about pain and how to deal with it. Tattooing is painful, and it has forced me to learn how to breathe, fall into it, relax, dissociate, and just embrace the experience. Fighting, clenching, squirming, complaining, jumping, twitching - none of things lessen pain. That isn't a lesson I'd ever read in a lupus book or get from my doctors. It is a gift from my tattooing experiences. There are many different kinds of pain, but the method and mindset I learned in the tattoo chair applies to them all.
So today I live with lupus by taking my pills, having my regular blood labs and other tests, going to my doctor's appointments, living a healthy lifestyle, and all the while I keep plugging away at this hide of mine with my amazingly kind, honest, and talented artist, Bald Bill Henshaw. So there's actually a fourth way in which tattooing helps me, and that's the sheer enjoyment of it. I love coming up with designs, pondering what I'll do next, I love sitting down with my artist to bat around ideas, I love the camaraderie at the shop, and yes, I do love showing off the final products. I guess one could consider this a hobby, but it's one that benefits me and enriches my quality of life in ways far beyond what knitting or thimble collecting ever could.
I'm not recommending that every lupus patient should run out to get a tattoo and expect a major life change. I'm simply relating what the ongoing process of tattooing has meant in my life so far. If you are a chronic illness patient interested in trying body modification, make sure to consult with your doctors first. You may have special needs, for instance, since my immune system is wacky, I need to take antibiotics every time I get tattooed and pay extra-special attention to my wound care. Talk to your doctor openly and honestly about what you want to do to make sure you do it in a safe, healthy way and have a good experience. If your doctor refuses to help and it's important to you, you may have to "shop around" to find a mod-friendly doctor.