No, I’m not talking about someone with chronic illnesses as indifferent, I’m talking about the people around them. They can be family, friends, medical workers, community. The biggest fault most individuals who are trying to navigate illness, is believing that their support system is there without fail.
Some people have dealt with illnesses since childhood, and have an innate ability to operate in the world, socially or within their family, as though it was always their normal. Of course, with school and adolescence, it’s normal to want to challenge their limitations… wonder if that peanut allergy is real, or if it’ll really be so bad if they forget to take their insulin. Things most other kids don’t have to worry about.
I was a healthy child and adult. I am mixed race, and where, in the Bay Area it’s not so noticeable, the 13 years I spent in a Salt Lake City suburb, during my adolescence in the 80’s, was that shining spotlight of noticeable difference. As it was, I wished I had the blonde hair of Farrah Fawcett, or Julie from the, “Love Boat”. I imagined myself with a blond haired, blue eyed husband, no, “brownness”, anymore. I mean… brown? That’s the color of dirt.
Living in Utah, with people always saying to me, “how nice it must be, to be tan all year, or people literally stopping me in the street or hallways of school, asking me, “what I was”, was bewildering and I hated it.
We are taught that as we grow, as we mature, there will be more acceptance and understanding we’ll find commonalities in our differences love and acceptance for who we are. Some of us grow up with this blind optimism, others prefer staying the more socially acceptable, mean girl, or passive aggressive fake person, or just that charming, yet entirely indifferent person who weaves through life cloaked in likability, but always standing in shallow waters. It’s much safer, isn’t it?
Unfortunately with illnesses, especially rare, complex, chronic illnesses, there’s not a whole lot you can do, to paint this content portrait for the benefit of those around us. We can take our meds, try to mask our pain, even preparing days ahead in advance, for an event, like a friend’s birthday or celebration. Those are our moments of deception. We stay on the sofa for days, drinking broth, ignoring the phone, maybe taking extra medications we don’t want to or critically need, just to make it out the door for a few hours. We create the facade in order to make everyone more comfortable, until we can’t.
Sometimes, most times, despite every measure taken to swipe that paint stroke over our mouths to form a smile, you still see the streaks begin to smear the makeup. The unintentional tears that spill when the pain is unbearable, the flare is too much, the grief, the grieving becomes too much. The, “remember when”, factors in… I remember when I could go running daily, when I could go to work, do yoga, never miss a party, to be the one who was always there, like the verse from the song; Wishlist;
“I wish I was the verb to trust that never let you down”
~ Pearl Jam
…it sticks you like a knife.
We didn’t learn to navigate life as chronically ill, sick people. It was thrust upon us like an earthquake. Unexpected, shaking, big and terrifying. Shit is falling off the walls, and we’re supposed to smile and stay calm, as the ceiling cracks and you watch it spider down the walls, crumbling dust, and no control over when the shaking will stop. But for your comfort, we should just smile. It makes everyone feel better about themselves. That’s what’s important.
Emotional intelligence tells us that human nature is a work in progress, that we need to grow and learn from each new experience, that we’re imperfect beings who should never become lackluster in our endeavors. But apparently this excludes illnesses. How dare we? How dare we remind people that they too can become sick? How dare we walk around pale, fat from medications, but starved for food? How dare we pass out, vomit, have diarrhea, headaches, and how dare we let our lungs not accept air, or our heartbeats not stay steady and regular. Wasn’t that all in the, ever trusty forecast? Did we ignore what they predicted?
It’s called indifference. It’s called toxic expectations
Towards the end of the year, a fellow sick friend and I like to discuss our New Years intentions. One year it was decided to have lowered expectations from the people around us, to avoid getting hurt. This year, it was about being, “a LOT more real”, about our illnesses with people. It goes like this…
“How are you feeling today, Jen?”
“Hi… I’m feeling horrible, I’m dealing with too much, it’s not a good day. Thanks for asking, I hope you’re doing well.”
Cue the sobering blindside. How could she be so blatant with her suffering? What an attention whore. She wants everything to be about her illnesses. Why is she even complaining? She gets to stay home, collect, “free money”, and watch tv.
That’s the perception, at least. It’s not the reality of how many doctors appointment do I have this week? How do I afford my copays, my medications, how will I get there? If I’m too dizzy, or in too much pain to drive. How can I prepare myself through dehydration and the symptoms of a severe flare? How am I going to prepare foods? What will I be able to eat? How do I do this, care for my child, my pet, myself, when taking a shower exhausts me for hours?
Then again, there are those people who hold space for you as you navigate. They don’t know what do, just as much as you don’t know what to do, how to manage your life with failing health. Some people just have the capacity, the patience for this. They know they don’t know, and they know we don’t know, it’s the same thing that makes for a successful marriage, it’s oxygen, it’s holding space, not taking space, but holding space. Knowing that you’ll weather the storm, knowing it’s better to scream with you during the earthquake and help to clean up the mess, after the shaking stops.
This creates space for more joy, ultimately. Because we will learn. We don’t know how to navigate with a compass, without first learning to read a compass, find true north and understand the coordinates.
Yes, your sick loved one is a hot mess right now. Scared, confused, angry, unaware. But it doesn’t mean they’ve disappeared completely, permanently.
I’m not a Christian, but there’s a verse from a Christian song that I love, “as I have loved you, love one another”. And of course this famous quote…
It’s true that personally I still have that perpetual, blind optimism about love, tolerance, acceptance and faith in my fellow human beings. But I’m learning to discern who I need to be, for each individual. And though I’ve never been one to easily cut anyone from my life, I’ve learned that the toxic indifference of some people will affect my overall wellbeing. When you have so little, “wellness”, in your life, you need to hang on to every ray of hope that you can. You may have to start again, with all new people, but casting off the shackles of someone else’s expectations can bring a freedom that allows for a much more significant and genuine experience, than you ever thought possible.
It hurts initially, but it can ultimately be so rewarding, and you’re worth it. It doesn’t matter if you’ve been sick all your life, or if you suddenly got very sick as an adult, you still deserve joy, you still deserve your truth, and you still deserve love!
Chronically Fabulous Warriors 