“What is real? How do you define real? If you’re talking about what you feel, taste, smell, or see, then real is simply electrical signals interpreted by your brain.”-Morpheus, The Matrix
In rewatching the original Matrix trilogy in preparation for the new movie, I was struck by the allegory the first movie made for the experience of disability. The premise of the franchise is that humanity is unknowingly trapped inside a simulated reality created by machines, like being plugged into a computer. I first realized this allegory when the main character Neo, meets with his mentor Morpheus for the first time.
Neo, in the first 45 minutes of the first Matrix movie, has 80 lines, 44 of which are questions. This is exactly what it feels like with the onset of a disability. Your whole life is changed, everything you thought you once knew about your experience of your body and what’s happening to you isn’t true anymore, and you’re confused and overwhelmed, exposed to a whole new reality that you didn’t know could exist.
When Neo meets Morpheus, dumbfounded by the sequence of events unfolding, he asks, “Is this real?” and Morepheus responds, “What is real? How do you define real? If you’re talking about what you feel, taste, smell, or see, then real is simply electrical signals interpreted by your brain.”
“Thank you!” I shouted at the screen. It was a lightbulb moment. Perhaps the biggest stigma and misconception I hear about having an invisible illness like fibromyalgia syndrome is that it’s “not real” or “all in your head.” Not only is this objectively false in addition to invalidating and ableist, but I found Morpheus’s words to be a thought-provoking response– what is real anyway? You might not be able to look at me and see my struggle, but my neurons are sure sending signals that my brain is interpreting as all different kinds of pain and fatigue among many other symptoms, so doesn’t that make it real no matter what? I’m sure feeling it in my body, so that should be enough for others to know that it’s real for me, even if it’s not written all over me. I don’t use a cane, have rashes, have congenital defects, etc but that doesn’t mean there isn’t a pathology going on underneath.
Many people see me having an active Raynaud’s episode, where my fingers go blue or white, and panic about how unsettling it is and if I need medical help when truthfully, it’s superficial, and I go in and out of having Raynaud’s all day long sometimes. It’s annoying at best because the extent of my worst fibromyalgia symptoms is probably just so much worse that my tolerance for things like Raynaud’s is high. What I need people to really be concerned about, my neuropathy, muscular dysfunction, joint problems, cognitive and sleep problems, are not so obvious.
Chronic pain and fatigue seem to be the most widely misunderstood part about this disease. But why? Acute pain and tiredness are something everyone feels in life so they assume they must have some authority on diseases like mine. That couldn’t be farther from the truth. In general, chronic pain and fatigue is not an experience people can understand if they don’t have it. Moreover, in a disease where 90% of patients are female and we already know women’s pain is taken less seriously– the misogyny adds to the stigma. It is literally physically impossible for others to ever experience the depth of what this pain and fatigue feels like unless they have my pathology– unless their neurons are firing improperly like mine.
Before being diagnosed, I thought fibromyalgia was aches and pains here and there, not unyielding, constant severe neuropathic nociception in my hips, in my arms, in my back, in my neck, in my shoulders, in my jaw, in my bladder, in my GI tract, in my esophagus, in my scalp– you forget how many muscles you have that can experience dysfunction until you need them and they’re not working right. I haven’t lived a day without nerve pain since 2012. After many frustrating conversations with people who lack empathy, I learned they don’t understand because it’s not for them to understand. They never will and they never can, unless it happens to them.
Many times over the course of this chronic illness I’ve asked myself things like “Am I crazy?” or “Am I making this up?” just like Neo. All these moments I’ve doubted my experience was the result of conditioning from endless gaslighting by society due to ableism– the same way The Matrix lies to people and presents a false reality. We don’t want to seem like the person who’s always complaining or blame everything on our illness. It’s confusing for even me, a fibromyalgia veteran of 10 years, sometimes to tease apart what’s happening to me in the moment and why. But the truth is, a chronic illness is called chronic for a reason– it never goes away, never rests, and doesn’t care what plans you have, work deadlines are coming up, or what holiday it is. I am dealing with it 24/7/365.
In the franchise, they say that whatever happens to you in the Matrix, your body makes real. People diminish fibromyalgia as “all in your head” because “you’re just depressed” and that’s causing fibromyalgia symptoms. Sure, my anxiety or depression worsens my experience of my chronic pain and fatigue, but that doesn’t make it any less valid– in fact, just like the Matrix, my body is making it “real”. I’d also be more concerned that there are so many triggers for symptoms all the way down to stress and mood instead of using that as a reason to dismiss it.
So the next time you doubt your own experience of your body, a doctor questions how serious your pain is (especially as a woman), or your symptoms go ignored, forgotten, or gaslit by coworkers and family members, remember this lesson from Morpheus: what your brain is telling you you’re feeling, is the only thing that matters, and it should be taken seriously.