“Sometimes the accumulation of his silence seamed to heap upon him, as slowly as snow, until he felt he could no longer be seen.” –Mr. Panicker (a character in “Aerogrammes,” by Tania James)
And sometimes I lose my breath when lines in a story are so applicable to life with chronic illness. Whether a person withdraws from others due to devastating physical symptoms, a lack of understanding from others in our lives, the clinical depression that’s comorbid with so many illnesses, or yet another of the myriad factors for social withdrawal, chronic illness is incredibly isolating.
I cut myself off when my attacks are severe because it takes more physical and mental effort than I’m capable of giving.Unfortunately, that’s meant years of silence in some cases. Even when I feel “better” (my version of better being far sicker than a healthy person’s idea of well), my energy is so limited that I often spend it all on the minutia of daily life rather than socializing. While I’d very much like to reconnect with my loved ones, the day-to-day tasks feeding myself, seeing doctors, doing laundry, wrangling with health insurance, and working have to come first.
Just like Mr. Panicker’s silence accumulates, so do the symptoms of chronic illness. As the symptoms pile on, a patient can become unrecognizable to even ourselves. How can a person connect to others if they don’t even know who they are anymore? I used to dread having to talk about my life. I had nothing to talk about other than illness, the severity of which I was unwilling to acknowledge. My days were solely dedicated to survival and not in an exciting I-defeated-a-grizzly-bear kind of way, but of the can-I-go-to-the-bathroom-now-or-does-it-hurt-too-much-to-move, I-must-feed-myself-so-hunger-doesn’t-trigger-a-migraine variety. Now, I’m more willing to talk about illness and I’m more aware of how much work I do every single day, but I still often think my life must look terribly boring to other people.
The stigma of chronic illness imposes yet another kind of silence. Some people don’t feel like they can talk about their illness without sounding like a complainer, so they just don’t say a word. Others always have to put a positive spin on it, focusing on some miniscule change or possible new treatment. (I’m guilty on both accounts!) Then we encounter the numerous healthy people who are afraid of chronic illness or think they have the answers, forcing their beliefs or cures or stories on us. In these ways and many others, those with chronic illness, like Mr. Panicker, are unseen.
It’s not that people with chronic illness want that illness to be at the forefront of every interaction. We don’t want to be singled out or pampered or treated any differently, but we want to be seen. We want to have all the aspects of ourselves recognized and illness is one part of who we are. When someone tries to deny our realities and experiences or forces a “cure” on us, they aren’t seeing us for who we truly are. For me, that’s what hurts the most — when a person can’t be bothered to see all of me, chronic migraine included, and see what an amazing feat it is that I get out of bed every day.
It took me many years to accept that the people who tell me I’m brave are right. I am courageous and strong for trying to live a full, happy life when I have a debilitating chronic illness. I can dismiss the people who call me weak because I am sick because I know they are wrong. It’s the people in-between, the ones who don’t blame me, but also think I would get better if I tried harder or the ones who gloss over the role migraine plays in my life that I get most frustrated with. Those who make the effort to see me for who I truly am, who are not afraid to acknowledge my illness, are the only people to whom I feel deeply connected.
Again, I don’t want to be only seen as a person with chronic migraine, but to have all the aspects of my identity — good, bad, messy, complicated — to be acknowledged. Illness isn’t all that I am, but it’s a huge part of me. A part that makes my life difficult and my triumphs noteworthy. Denying or ignoring the role of chronic illness in my life invalidates the tremendous achievements, the emotional fortitude, the unbelievable strength I display every single day.