When friends dismiss your illness
"When friends dismiss your illness, it's a harsh reminder of the need for empathy and understanding in our relationships." | Photo credit: ©Halfpoint / Adobe Stock
When friends dismiss your illness
On Speaking As Spoonies
Welcome to the shit show.
Forgive me. But I'm assuming if you're here, you're either
a) friends or family (sorry, Gran), or
b) chronically ill, in which case there are no words more apt to describe the turn your life has taken than a good, solid cuss.
First, your chronically ill existence makes people uncomfortable now. Not nearly as uncomfortable as you, of course, but the harsh reality is healthy people can be massive babies when it comes to discomfort. If that's a little harsh, try asking one to wear a mask.
One of your many jobs, then, as a brand-new spoon, is to get very comfortable not only with your own discomfort but with the discomfort of others. Make no mistake— they can and will do their darndest to make it out to be your fault. There will be uncomfortable conversations. Friends will dismiss your illness.
Enter exhibit A:
I am talking to X, Y, and Z. Z has a lot to say, just "normal" things. What they did today, how work was that week, etc. Maybe I could chime in with a word or two about my week?
Being newly chronically ill, another of my jobs is being a full-time patient, so I mention one of that week's many, many appointments. Z immediately leaves.
No big deal. It can't be anything I said, right? I say my piece and quiet down.
Z immediately returns and continues talking.
Someone offers me a biscuit. I have a myriad of dietary restrictions which I observe religiously just to keep somewhat functional, so I politely decline, briefly explaining the situation. Z leaves.
Now it's getting suspicious. I could've sworn Z shot me a nasty look as they left, so I quieted down again.
It's time to test the waters.
X, being helpful enough to assist me in wading through the endless brain fog, keeps an eye on my appointments. So I ask,
"X, do you remember if my next appointment is on Tuesday or Thursday?"
During this exchange, Z has simply evaporated into the nether. They later quietly complain that I always make the conversation all about myself, but not to my face, because they're scared if they talk to me about it, I might have the audacity to mention my illness again.
A great way to make someone leave the room, but not exactly validating to the nature of my new experience of existing.
Later, I find myself walking with Z.
"If you're not careful," they snigger, "X will have you on disability… and get you cleaners."
Whatever in the internalized ableism makes Z think this is a fine thing to say to someone who suddenly finds cleaning an extreme endurance sport, I still have no idea.
Things like this happen to all of us. Even though that last statement reeks outrageously of privileged judgementalism, you may be tempted to quell awkward conversations around your disease or disability. You might get intrusive thoughts creep in like, 'Maybe I am making it all about me,' or 'I don't want to draw attention to myself or seek pity.'
"Besides, "Z cries, "It's not like you're that sick."
Maybe you don't look sick, or perhaps you have good days and bad days.
Many of us will have a Z downplay our illnesses. I have aggressive Sjogren's disease myself. I have had someone tell me that if I'm going to have an autoimmune disease, Sjogren's is the best one to have because "it doesn't do anything too bad."
I was hospitalized the next year and later had resulting gastroparesis. I'd like to see the person who told me that survive on a minced and moist, low fat, low fiber, small particle, low FODMAP, dairy, gluten, and red meat-free diet (I should note that gastroparesis triggers are different for everyone, but those were mine at my worst.)
Here's the thing: the Zs of the world exists loudly. And I mean LOUDLY. If you don't believe me, again, ask them to wear a mask and just watch the fuss they kick up.
They document their experience, they riot because they can, and they stomp and complain and cheer themselves on. So why are we trained to be any different? I have a theory.
We, the chronically ill, make them uncomfortable. They expect us to live just like them, but we can't. We need, and have a right to, accessibility tweaks. We have a right to them because we have a right to exist.
Yet, it is so much harder for us to do so because we are living in a world made for the healthy.
Healthy people don't need to talk about their illnesses so much because they tend to get better. Ours, of course, keep coming back for more, even if we get treatment that controls our disease to an extent. So, do we forfeit our right to document our human experience because healthy people get bored of hearing about it?
Healthy people have so much to learn from us. The chronically ill are some of the bravest, most open, and most resourceful people I have ever come across (if I do say so myself.) As a fresh baby spoon, I was nervous talking about my disease at all, let alone what I deemed the 'ugly bits.' Enter the chronically ill community, who talk openly of bowel habits, gastric, menstrual, and urinary symptoms, and even the functionality of their buttholes! Uncomfortable? It won't last long. I, too, can now share my experience with them without fear or embarrassment.
And this is groundbreaking stuff! Imagine if we could all do that, regardless of whether healthy, disabled, or chronically ill. I've seen whole campaigns encouraging people to talk to their doctors about difficult topics, be it mental health, our waterworks, poop, vaginas, prostates, etc.
We're all living, breathing animals. There seem to be endless aspects of being alive branded unseemly. Still, I have never encountered that shame or censorship within chronically ill circles.
What if that was extended to the whole community at large? How much easier and less distressing it would be to access the help that we will all need at some point or other in our lives, no matter how lucky we are (or aren't). I would like to see more of it, personally.
So, if you're newly chronically ill, welcome a new spoon. We see you. And for the seasoned spoonies, thanks for being here. Rest up, everyone, seek the help you deserve, and consider this your permission to give existing loudly a try (when you're not napping. But we have the right to nap, and we jolly well nap.)
Imogen Kinley, the author of "When friends dismiss your illness," is a student of library services and PA to a very good moggy. Likes: animals, books and mushrooms. Dislikes: Sjogrens disease and the horse it rode in on. She doesn’t have social links because she’s easily spooked.