I am reclaiming the word disease, along with its meaning and the uneasiness of using it. I claim it like a lottery winner to their prize. I market it like a grammatical CMO. I take responsibility for its use. It’s mine by style.
Why pick on a word like disease, and not illness? And why is this important anyway — to have to reclaim it? Illness, after all, sounds more sterile — certainly more medical; less sticky to the tongue.
The difference is subjective, but important to healing. Disease is more malignant than illness — it manifests and lingers. Where illness is biological and localized in the body, disease proliferates, is perception-focused, and is nondescript. It’s a ghost that can’t be so easily identified through lab tests and biopsies. It manifests not in the organs, but someplace between thought and spirit.
Linguistically, dis-ease causes un-ease; breaks your swagger; is the opposite of comfort. But it also denotes something psychosomatic — a version of mind over body. If we own our dis-ease, we have better control over living, can be more contented, can take a gentler stride. Supposing the illness persists, we can work to cure our disease.
I am a two-time cancer survivor living with HIV. The illnesses manifested between my 31st birthday, when I found out I have HIV, until somewhere around the age of 36, when the second cancer retreated. The disease developed some time between the HIV and my first cancer diagnoses. The symptoms of disease were not physical, but instead showed up as self-doubt, self-abandonment, and kept me in rudimentary fight-or-flight mode. And stress is known to destroy our immune system. Disease leads to illness.
As you can imagine, the double-blow of HIV and cancer made me feel shaken, weakened, and vulnerable. My body became a third-party object — a half-living rack of dis-eased brawn to treat with medications, radiation, and chemotherapy. It felt pain — I felt pain — but my body felt separate from the rest of me. My mind was spiraling. My soul unthought of.
I started to tell myself stories that the rest of my life would be a chain of sicknesses. A chain that would eventually cause a weakened version of me, stretched to the breaking point. I was depressed; stressed. I stopped living lightly and became sudo-serious. I accepted a bleak future. I became my disease.
Then one morning, without reprieve, I started to laugh. More specifically, I started to laugh and sing at a time when I was voiceless — after three months of paralyzed vocal cords post-thyroidectomy. The singing at first mimicked the voice I’d heard for twelve weeks — soundless whispers that mocked laryngitis patients. But the following day, I noticed my voice was slightly more raspy; more audible. It wasn’t just a whisper anymore. So I kept singing and laughing. In three days I heard texture in my wheezing — I could talk again.
There is a quote by Jon Kabat-Zinn that I often look to when thinking of this moment:
What is required to participate more fully in our own health and well-being is simply to listen more carefully and to trust what we hear, to trust the messages from our own life, from our own body and mind and feelings. This sense of participation and trust is all too frequently a missing ingredient in medicine.
In an earlier life, I too may have thought Norman Cousins was a madman. I love to laugh — piercingly, repeatedly, easily. I sometimes laugh so hard, doubling-over, that my laughing itself looks like a medical condition. But using the power of laughter for healing? No way.
Then it happened again. Laughter helped when I was diagnosed with a second form of cancer (albeit less aggressive). More chemotherapy, more surgeries — and more laughter. I wasn’t stress-free or without worry, but I had a new partner with which to live through this experience. I could laugh (and sing). It was around this time that the relationship with my maladies changed. I stopped believing the collective narrative our culture has about illness, and starting telling the story of strength, self-care, and self-fulfilling prophecy. I started looking at the deception married to illness.
The anecdote I was telling myself — that HIV and cancer were a way of life — was probably the most damaging part of the narrative. I discovered that the story surrounding the drama of treatments and lifelong pill-popping was my disease. As Norman says, “the tragedy of life is what dies inside a man while he lives – the death of genuine feeling, the death of inspired response, the awareness that makes it possible to feel the pain or the glory of other men in yourself.” In my own terms, that meant giving up living authentically and instead settling for treatments, bad behavior, self-deprecation, various addictions, and believing that the best version of me had already happened some time in the past — before the traumas happening to my body.
I started to meditate. I took my decade practice of vegetarianism to another level — the socially-dreaded vegan. I spent more time with people who made me feel loved and kept me smiling. I met life easier — dis-ease is a matter of mind after all, not body.
Then I reclaimed the word disease. Let’s talk about it. You are not your disease, even if your ailments are chronic, lifelong companions.
I started by changing the story about how we see our condition — first acknowledging that much of our societal stories around being sick are part of the problem. Often, sufferers of illness don’t have enough positive role models to inspire and help us believe in strength beyond prescriptions and “getting through it and moving on as a survivor.” We don’t often consider the power of self-healing in the New World.
And then, secondly, acknowledging how much of the collective story you accept about yourself. Like most of society, do you see people living with HIV as weak? How about cancer, diabetes, and kidney disease? Between hospital visits and antiretroviral cocktails, do you eat nutritious food, laugh, create, spend time with friends, and enjoy moving and dancing and not thinking about, well, your disease?
My body surely felt not-as-strong when I was knee-deep in sickness, but I could still put on a Frankie Knuckles record and move — and then laugh at how I’d downgraded my dance moves for an aching body.
I danced anyway, though. It’s probably why I’m still here.