5 Chronic Illness Labels I've Learned to Reframe
Of all the tools I’ve learned in cognitive behavioral therapy (CBT), “reframing” might be the one most valuable to me as someone with chronic illness. There are so many labels ascribed to disabled and chronically ill people that imply a fusion of destiny with diagnosis. Many of these labels, while they may be useful to medical professionals for diagnosis and treatment, reduce the lived experiences of ill people to black-and-white binaries. In CBT terms, what’s a black-and-white binary? That’s right: it’s a cognitive distortion! Labels can be useful, but sometimes hearing them repeated over and over only serves as a barrier toward fulfilled, meaningful living. I want to “talk back” to these words that are plastered all over my body and life. I want to reframe the intractable, and be the impossible.
The disease I live with, immune thrombocytopenia, is technically incurable. It is a relapsing and remitting disease. I have a chronic, severe, treatment-resistant form. If people with autoimmune disease experience permanent remission, it’s because their bodies righted themselves, not because they were “cured.” It is difficult to think of being saddled permanently with this thing you don’t want, this burden, like you’ve been branded with a hot iron against your will. Being told you have an incurable disease, whether common or rare, minor or life-threatening, involves a shift in the way you see yourself.
But maybe there’s another way of looking at it. What is it I need to be cured of, really? Perhaps there is a difference between a cure and healing. Perhaps internal healing is actually possible without a cure. Maybe there are ways I can heal myself, and even the world, that are open to me regardless of whether medicine ever finds a “cure” or not. Maybe there are relationships I can have despite chronic illness that touch deeper parts of me, that make any pain or sickness I feel pale in comparison to what I can transform through care and commitment.
Before I got sick, I felt like I could do anything. I was extremely high-functioning, active and successful at my job. I was planning on hiking the 220-mile John Muir Trail the summer after I got sick. I say this not to boast, but to underscore how much of a change I have seen in myself since being under the influence of medications that mess with how my brain works, and the sinking feeling that long-term psychiatric problems are affecting my ability to think clearly. I have a verifiable cognitive impairment, as well as physical tiredness and reduced stamina that is readily apparent to anyone who knows what the “old” me was like. I went from being able to hike 12 miles a day to having trouble with two.
It’s difficult not to look at myself as damaged goods sometimes. I miss having the drive and ability to accomplish things. Impairments can feel like chains, holding you back from what you ought to be able to achieve. But, on the other hand, I have no way of knowing that a life without physical impairments is actually a freer life. True, I would have fewer doctors’ appointments, fewer bruises, less pain, more travel, more career advancement. But I would also have more obligations to continue advancing in those directions. The inertia created by increased ability would bring with it its own limitations. There is no alternate reality in which I will not experience difficulty and pain of some sort. I would have kept doing many unhealthy things in my life out of a sense of momentum and responsibility that, in the end, probably weren’t actually worth it. In some ways, being sick has set me free. I am free to contemplate how I am valuable as a living being without the expectations of society determining my value based on what I can accomplish.
I hate this word, disordered. It feels dirty, like greasy hair sticking to your eyes, or stumbling down a road you don’t recognize in the dark. How I would hate to be disordered … and yet I have so many of these diagnoses ascribed to me. Generalized anxiety disorder (GAD). Persistent depressive disorder (PDD). Bipolar disorder. Unspecified neurocognitive disorder. Other specific trauma-related disorder. Autoimmune disorder. Blood disorder. The list goes on. One begins to question whether there is any part of my body and mind that is functioning correctly. Disorder means pain. Disorder means chaos. Disorder means out of balance, swinging back and forth outside the bell curve and smacking your face against the bell tower.
When I see the litany of disorders, I need to remind myself of the ways in which I am very ordered. When I feel pain or nausea or tingling in some part of my body, it helps to focus on a part of me that does not have that sensation, and live in it, like a comfortable nest in a stormy winter. There are also ways in which I am extremely ordered. The way in which I cope with my illness, for example. I tackle that like it’s a full-time job. That’s no small feat. Organizing illness and chaos into mindful, manageable living is creating a beautiful, elegant order all on its own. My love of language and animals, the ability to taste what is sweet and bitter, the feeling of soft cotton on my skin, all of this speaks to an orderly, functional dance of desire, experience and sensation.
I am not completely unresponsive to treatment. Most treatments, I am “partially responsive,” but I know many others who will be hit with the “unresponsive” label. For autoimmune diseases, there are often a plethora of treatment options available, none of which are guaranteed to work. The only way to find the right one is to try them, one by one, living through the side effects and negative reactions, waiting to see if relief comes. I have yet to find that relief. I’ve found partial, temporary relief many times, but at a cost. Treating your own body like a guinea pig in a medical experiment goes against your self-care instincts. It feels like every time I take a risk, only to hear that disappointing result, “unresponsive,” that I’ve just injected myself with poison for no reason.
This is hard to reframe. But it helps me to realize that actually, my body does respond each and every time. The reason certain treatments might not work is because my organs are filtering out the foreign chemicals too well for them to work. My liver and kidneys are champions, my body responds to damaging substances by fighting against the intrusion. So, even if the desired result isn’t what I had hoped for, I’m hardly lying there passively. There’s a war going on, one my body is actively engaged in fighting, responding to changing circumstances every day. I am not unresponsive, just unpredictably responsive. This just means I am alive.
It sucks to think I am dependent on treatment to live. Whether it’s a synthetic peptide or donated plasma products, I’m dependent on regular monitoring and some kind of medication injected into my blood on a regular basis to stay alive. This is sobering. It means I’m dependent not just on modern medicine, but on health insurance, and the whole societal system that keeps such expensive intervention possible for an individual like myself. It certainly makes me feel fragile and childlike, as if I have an umbilical cord to the womb of society I cannot cut.
This one is probably the hardest for me to reframe. Ironic, isn’t it, because I do live alone and have a job, albeit with accommodations — two criteria our society believe are necessary for one to be “independent.” By all objective measures, I am actually doing quite well for myself. But I just can’t shake the feeling one mishap could ruin it all. I feel dependent on the good graces of Fate herself some days.
I guess the only thing that really helps with this one is to remind myself we are all dependent. There is no one alive who does not depend on other human beings for communication, food, protection and a myriad of other needs. I may have unique needs, but I am hardly the only human being alive who has needs. I am certainly not the only one who is dependent on modern society to stay alive. In many ways, I have independence in the form of knowing advanced first aid and having very good research skills. So perhaps, even though my dependence is physically quite striking, rare, dramatic and very financially apparent, there are other ways in which I am more independent than others.
Being medically dependent also does not preclude a healthy interdependency with others. Our culture values autonomy to such an extent we sometimes forget “nemo est insula” (no one is an island). Seeking relationships of kindness for the exchange of care, goods, services and healing is not only necessary, it can be deeply satisfying. As human beings, our connectedness to the communal need is what propels us forward to new discoveries and insights. For that transformation to occur, each and every one of us is needed.
Unsplash image by Bruce Mars