Who Wins in a War of Attrition? Not the Warrior.
It’s time to re-evaluate calling disabled & chronically ill folk “warriors”.
When I was first referred to as a “warrior” in the context of my disability, instead of feeling strong or proud, I felt outrage and revulsion.
Now I am, by nature, a little bit reactive. I tend to have strong emotional responses to things — people, songs, movies, literature — before I’m aware of why the response occurred at all. As an adult, it’s taken years of careful effort not to let this impulse to react before I think get the better of me, but on some days, this is easier said than done. So it has taken me a while to parse the cause of my immediate feelings towards this label.
You may or may not have heard of people with disabilities or chronic conditions being referred to as “warriors” or “fighters”. Some chronically ill and disabled people have even adopted the label themselves, framing themselves as “Chronic Illness Warriors” capable of overcoming their condition with the right attitude and the right tools. A chronic illness warrior then is someone locked in a battle with their own mind and body but marked by their drive to conquer their condition. There is even something of a social media movement around it on Instagram, Facebook, and TikTok.
Of course, it’s not a coincidence that we use the terms of warfare to describe and refer to people living with chronic conditions. To be chronically ill is to be caught up, unwitting and unwilling, in a war of attrition. The stakes are precipitously high, and probability of relief is vanishingly low.
I suspect — not without compassion — that the “warrior” language around people living with chronic conditions arose out of a desire to acknowledge the challenges that we face and the work we do daily to live and achieve our goals in a world that is frequently hostile to our existence. We are very often working at odds with our own bodies and brains in a (literally, figuratively) paralyzing tug-of-war. According to this paradigm, because disabled and chronically ill people are warriors, we should be lauded for and encouraged in our efforts to overcome our condition — to persevere in the end.
I’d like us to re-evaluate that narrative. Rather than lionizing the courage of people with disabilities and chronic conditions, I believe the warrior rhetoric feeds into ableist expectations of normality, creating a set of conditions around how we cope (or don’t cope) with chronic conditions that suits the abled rather than the disabled. The warrior rhetoric in its truth is not about “fighting” illness, it’s about performing good health.
Liminality in Disability
I have fibromyalgia, which means I experience daily widespread body pain and fatigue of varying intensity. These primary symptoms are accompanied by difficulties with concentration, memory, reasoning, and decision making — the faculties that comprise what neuropsychologists call “executive function”. I experience itching, tingling, numbness, shocking pains, stiffness and weakness in my limbs, difficulty swallowing, and problems with balance. I also experience difficulties with digestion and disturbed sleep. Like other chronically ill people, I also have a laundry list of other conditions to go with it, but fibro imposes the most on my life. It’s debilitating and I am disabled by it.
Fibro is one of those disorders that the medical establishment is really only beginning to understand. For years, it was treated under the umbrella of rheumatology, lumped along with rheumatoid arthritis, lupus, gout, and a variety of other autoimmune diseases. Current research, however, now places fibro in a category closer to neurological or sensory processing disorders than inflammatory disease.
As best as medical science can tell, my brain and spinal cord do not process sensory information the same way as people with factory standard brains and bodies. Instead, my brain is sensitized to pain, producing it from sensory input that other people would perceive as touch. When I do experience pain — from a minor injury like a bruise, for instance — I feel it more acutely than would typically be expected for an injury of its type and severity. My brain is, in effect, primed for pain, and this pattern of altered sensory processing is evidenced by chemical, functional, and structural changes in brains of fibromyalgia sufferers. The precise cause of these changes, however, remains elusive.
Fortunately, fibromyalgia isn’t progressive. It’s not a disease state, and very careful management of myself and my environment goes a long way toward keeping my symptoms at a manageable level. While I am vulnerable to perturbations of my carefully orchestrated ecosystem, I manage fairly well most days. You probably wouldn’t notice that I am disabled unless I was using my cane. On the days where my condition is obvious, it’s because I’m too overwhelmed to hide it or put a brave face on it.
Fibro is tricky that way. It’s an invisible disability, a life-limiting condition that isn’t immediately apparent to others. You would think that without the materiality of a visible disability that people with invisible disabilities are able to escape the worst of the stigmatization that comes with being disabled, but that simply isn’t true. While the stigmatization we experience may not follow familiar or obvious patterns, we’re still subject to social disapproval and rejection, humiliation, skepticism, hostility, and discrimination.
A pertinent example is supermarkets. Supermarkets are huge, sprawling, and windowless spaces, filled with bright lights and miles of hard reflective surfaces that are devoid of places to sit. All these factors serve to create a space that is uniquely inhospitable (and often even dangerous!) to people with fibromyalgia, multiple sclerosis, degenerative joint diseases like rheumatoid arthritis, panic disorders, traumatic brain injuries, or even attention deficit disorders to name a few. And yet they are the primary venue for acquiring food, household goods, and essential personal items.
Most importantly, invisible disabilities can make it even more difficult to secure the assistance and accommodations we need to function effectively if we’re not “seen” as disabled. The burden falls on us to convince people of our needs: that we’re really disabled, not just attention-seeking or pursuing some unfair advantage. We must meet a higher burden of proof or forego the accommodations we need to survive in this world.
People with invisible disabilities exist in a liminal space: we are invisible as a result of our disabilities lacking materiality, and hyper-visible because our bodies and behavior (for instance, debilitating fatigue) don’t conform to norms of bodily functioning. Success for us lies in passing as non-disabled because passing grants access to employment and respectful treatment. But this is a double-edged sword: while passing allows people with invisible disabilities to avoid the worst of inequities, it also reduces or eliminates our access to the accommodations we need.
Warrior mindset — or not?
Warrior rhetoric is poisonous because it reinforces the primacy of able-bodied functioning and creates social pressure for the disabled and chronically ill to perform good health, the unfortunate consequence of which is that it implicitly calls into question the notion of disability at all. It’s a Catch 22. If you can overcome this, are you really disabled? Do you really deserve the accommodations you demand?
The expectation that we constantly fight and suppress our conditions also makes it hard to share our experiences in a way that lets us build empathy while dismantling the ways in which disability, and particularly invisible disability, is bound up with able-bodied standards and norms of experience. While increased public awareness and sensitivity has allowed disability to be spoken about more easily, the language we use around it still favors the comfort of the abled over the disabled. We verbally tiptoe around the more confronting parts of being disabled — poverty, abandonment, loss of bodily autonomy, dependence, alienation (from ourselves and from others) — to avoid making people uncomfortable, and in the process, we sanitize the experience. We swallow and internalize it for fear of rejection or, in the case of invisible disabilities, dismissal and scorn.
Telling people with disabilities — invisible or visible — that they’re a “fighter” or “warrior” (or whatever brand of martial condescension you please) is to disregard the long-term costs of negotiating life, unseen, with a complex and dynamic disability. It also casts the days where we don’t have the energy to put on a brave face as a surrender.
This isn’t something I can conquer or overcome if I’m just brave enough, if I just try hard enough. I have been in pain for as long as I or anyone in my family can recall. On days when I am overcome by my conditions, it’s not because I’m not trying hard enough, it’s because I am overcome. I refuse to buy into the idea that I should fight a battle I categorically can’t win just because it makes me more convenient or my pain less confronting to deal with. I’m not a “happy warrior”; I’m sick and tired.
Sanity or sanitization?
Six months ago, my condition reached an intractable peak. What medications seemed to help initially I quickly became resistant to. I was going to the hospital every three weeks for biologic therapy and I was slowly showing signs of developing resistance to even that last resort drug. I couldn’t sit, I couldn’t stand, exercise, wear clothes, carry a grocery basket, put any kind of pressure on my body without it swelling to the point of agony. My face, mouth, and tongue would swell up with disfiguring wheals that made me fear that I would suffocate in the night.
I’m a fairly robust person emotionally under normal circumstances, but I was quietly being sucked under my despair like a riptide. I was an alien in my own skin, dysphoric and disconnected from my body in such a profound way that it was spilling over into my marriage. I remember my wife gently confronting me with it and finally expressing my grief to her, as gut-wrenching and involuntary as it was, was like breaking the surface again.
Despite my instinctive resistance to the warrior paradigm, it has become so pervasive that at some point, I’d internalized the idea that I need to hide my feelings about my experience in order to be perceived as a functioning human, a reliable friend, a good wife — and that if I didn’t, I was weak and a burden.
I’m not saying that people with disabilities and chronic illnesses aren’t strong or brave for living our lives in light of (and maybe even despite) the challenges we face. We’re not passive victims and we do take active responsibility for our own survival. But it’s exhausting to think we need to constantly be battling when there can be no hope of victory, at least not in the able-bodied sense.
Willpower alone is not enough to transcend our embodied reality of disability, and to suggest otherwise — implicitly or explicitly — is to yoke us to a harmful and naïve conception of the relationship between mind and body.
Even now, it’s hard to write about my disability without wanting to minimize my experience in some way to make it more palatable or easy to understand. To make me seem braver. Invisible disabilities in particular are difficult to materialize or to make corporeal in any meaningful way for the abled. Communication, of course, is critical to understanding but asserting the bodily side of the mind-body duality is not a privileged form of communication, especially when disabilities are not readily identifiable by use of one’s senses. Can I make meaning out of my pain or the strangeness of my body? Does anything I write about my experience ultimately matter if it falls outside of normative expectations of communication? (Am I navel-gazing fruitlessly?)
Acceptance and compassion
Fundamentally, the problem is that for able-bodied people to engage meaningfully with disability, it will require emotional labor on both sides of the equation. I shouldn’t be required to show abled people the ugliest, most intensely vulnerable parts of myself in order to be respected or to have my needs considered. I don’t want to record my worst bed-ridden moments for the world to dispassionately dissect in the hopes that someone might see the human under the rictus of pain. And yet I am confronted by the reality that it may be one of the only ways forward.
Acceptance is a much less psychically draining approach. We need to stop placing central importance on meeting able-bodied standards, and a more nuanced understanding of what it means to be disabled will go a long way toward achieving that goal. Identifying as disabled, especially for those of us with invisible disabilities, is more complicated than simply meeting a purely “objective” set of standards, but calling ourselves “warriors” subtly reinforces the very norms we need to dismantle to achieve truly equitable treatment.
People with disabilities and chronic conditions are undeniably brave and we should be proud of ourselves for carving out a space to exist in a world that is unequivocally hostile to us. But equally undeniable is the importance of the vocabulary we choose to describe ourselves. While some might find the warrior label comforting or galvanizing, it doesn’t negate the fact that this language exists and operates within a larger system of ableism. If the goal is equity, then we must critically inspect how the language we use to describe ourselves can be weaponized against us, both by ourselves and others. Talk about the courage of disabled people if you must, but don’t call us warriors. We’re just trying to exist.
