The Lupus Foundation of America (LFA) dubs its members with lupus, lupus warriors. Being cast as a perennial fighter due to chronic disease is not just an LFA thing. I’m also a migraine warrior, according to more than one support site/online community. Although I haven’t seen similar troop-like nomenclature for my other ills (Sjögren’s soldier? Nope. Myositis mercenary? Nah.), the notion of being thrust into battle with one’s disease is pervasive in many, if not most, types of medicine, wellness, healing, adjunct support groups, etc. A diagnosis serves as an induction notice.
Assigning the role of warrior to folks with lupus and other chronic illnesses seems to work for a lot of people. If it works for you, I am sincerely happy for you! I have no desire to dilute or deny something that helps others. At the same time, it really doesn’t work for me. And I’m confident I’m not alone. Well, pretty sure. Kinda sorta … Okay, my neurotic tendencies aside, this is for all those other sick non-warriors out there.
As is the case for most people with lupus, getting to that diagnosis was a long slog for me. Three years before, I was diagnosed with dermatomyositis, a rare autoimmune disease of skin and muscle. And 7 syllables! Unaware at the time, I jumped into the warrior role. I was following expectations, if not orders. Medicine and wellness are designed around doing one’s individual utmost to get better, be well. Fight the good fight. It is your responsibility to procure the best medical care, provide for your changing needs, do the research (but be careful!), rise to the challenge and live right – eat, sleep, exercise, reduce stress just so. It ain’t easy. In fact, it’s so hard it takes the heroic efforts of a warrior. There are no guarantees. But there is the promise of “victory.”
So seductive! Of course I want to be healed, to feel better —and not just temporarily. Or at least regain some lost ground. I definitely want to be the good patient and do everything the right way. I’ve had more than my share of hardship,* so I know I can persist, can do hard work. And, um, yeah … I’ve fantasied about others recognizing my struggles, praising my fortitude. But after a couple tours of duty, I realized this mindset was a trap for me.
Because – and this is truly radical, in my opinion – there is no right or wrong here. Lupus is not my enemy. It is a mysterious disease process in which the immune system attacks healthy tissues in the body. While I like to anthropomorphize as much as the next guy,** there is no clearly identifiable cause of lupus (or my other diseases) like a pathogen to cast as nemesis, despite a lot of very good research. And my immune system continues to function as it is supposed to in some ways, while also malfunctioning. As we have learned in these pandemic times, the immune system is hella complicated!
No, I’m not going to start smoking cigarettes or anything clearly contrary to my living as well as I can. On the surface, not much has changed, really. But philosophically, I’m letting go of the notion that I have to fight to live well. I reject the idea that accepting my health as is and embracing my disabilities in order to best accommodate them is defeat. I’ve spent most of my life fearing I’ve done wrong, convinced I am wrong. I am so ready to be done with all that! I do not need to be anyone’s hero or inspiration. I just want to live well as I am. I accept myself as chronically ill and disabled woman living with my very own inner wolf.
*Where do Hardship Shares get traded? NASDAQ? S&P? Why on earth did I stock up on those?
**Obviously, The Next Guy is your go-to expert when it comes to trading in hardship shares!