I’ve been acutely, seriously ill all summer. You know this from previous posts. It’s not clearing up by itself, and I’m going to have the first of two surgeries to fix it in October. It’s going to be invasive. I’m going to be incapacitated. I’m going to have a temporary ileostomy for a few months. Then I’ll have another surgery. I’ll be hospitalized for a few days on either end. In the meantime, I still have this damn tube in my hip.
People have been sweet, and wonderful, and supportive, and concerned, and caring. But I still get (well-meaning) comments like “well, just take it one day at a time!” or “Your life could be worse!” or my absolute favorite, “you’re so good-natured about it all! You’re such an inspiration!”
No I’m not. I’m not here to inspire you and I’m not cheerful about this. I’m fucking pissed.
Do people seriously not see that? I must be a better actress than I thought. I’m not being good-natured about it, I’m being polite, because it’s generally not good manners to fly into an uncontrollable rage in public. It’s especially not good manners to take your terror and pain and frustration out on someone who has no clue that they have no clue. I haven’t accepted shit; I’m angry at the universe and frustrated and tired and in pain all the time and terrified out of my mind that I’m always going to be like this and holy shit okay crying now.
I’m only 30 years old, and I’m facing the possibility of medical equipment hanging off me for the rest of my natural life. What part of that leaves someone cheerful? I mean, unless you’ve got some fetish thing, in which case I ain’t judgin’. I’ve got so much of my life that I haven’t yet lived. And I just can’t fathom anyone wanting to stay married to someone like that.
I don’t know. I had more to say, and now I’m just overwhelmed with sadness and I can’t think.
I guess I would say, if you meet someone with a chronic illness, don’t tell them it could be worse. That completely negates the real suffering they experience. Don’t tell them they’re taking it so well. That means they can’t be themselves, and they can’t acknowledge the days they’re feeling bad (which is going to be most of them, okay?). And for the love of all that is holy, don’t tell them “but you look SO GOOD!”. That will get you a slap across the face. Because well, if I look good, then everything must be okay, right? I must not really be that sick. It couldn’t possibly mean that I’m just good at masking.
Here’s what to say:
“I don’t know what to say, but I’m thinking about you.”
“Wow, that really does suck.”
Or, you know, you could talk to your friend about fashion, the weather, the NFL, or whatever else you want. We’re more than our disease.
SO, don’t tell me I’m your inspiration. That means you have no clue about reality – that I whine to my husband and mother almost constantly, that I’m worn out by sweeping the house, that I smell like plastic tubing and old blood, that I’m 15 pounds overweight because I can’t exercise at all, that I’m wishing I could run away or sometimes borderline suicidal because I’m wrapped up in worst case scenarios. That I cry and throw tantrums when I drop something for the 15th time that day. That I’m much, much weaker than I seem.
I think my mom said it best, when she attended the decisive doctor’s appointment with me. She reached over and patted my arm, and chuckled sadly. ”Life’s a real piece of shit sometimes, isn’t it?”
Yep.
Tags: Chronic Illness, heavy stuff
*soft hugs*…..
Thanks, lovey!
Jo, anytime you need to bitch, cry, sigh, or vent, I got your back. I’ll never say anything patronizing or trite, like, “chin up, kiddo” or “look on the bright side of things.” Pain is pain; doesn’t matter if we’re talking about a stubbed toe or a terminal illness – it’s all valid, it’s all real, and it all deserves sympathy, kindness, and a friendly ear. And you’ve got mine. Good luck.
Thanks, Rob. The discussion on what qualifies as suffering is an ongoing one in my family.
<3
thinking of you.
<3 Thanks, B.
Been there, on pretty much all those fronts. And still haven’t figured any of it out for myself, so no wise words for you. But I’ll be sending good wishes your way. Hope the surgeries help long-term.
I was thinking of you as I wrote this, imagining you’ve heard one or two well-meaning but extremely stupid comments. Thanks for the thoughts.
you are preaching to the choir, sister friend. it bothers me sometimes when people constantly tell me how ‘positive’ i am and how i inspire them. i hear ya. neither cancer nor infertility (or Crohn’s etc etc) is anything you willingly choose as your journey and choose so you can inspire others. it sucks. it consumes your life and eats away at your true self.
i’m sorry everything sucks ass for you right now. it’s horrible, you don’t deserve it and i wish struggles like this were reserved for the most heinous criminals as kind, lovely people like you should be spared from this bullshit. i’m here. you’re on my mind. you are not my inspiration
but i’m sending vibes of health and well being your way.
love.
XO
You are such a joy and a treasure, D. Thanks and biiig squishes.
Thinking of you.
Thank you so much, Ali!
I am so sorry you have to go through this, Joanna! Thinking of you and really hoping the upcoming surgeries will help you feel better. Sending you a ton of hugs and good thoughts for the long road ahead. xoxo
I was also thinking of you as I wrote this, in terms of honesty/masking and anger/frustration. We’re not on dissimilar roads, in that respect. My best wishes and support right back at you.
First: very very gentle ::hugs::
Thank you so much for writing this. I’m so sorry things are the way they are for you. It totally sucks and I wish nobody had to deal with the things you have to deal with. I’m with Rob – if you ever need to bitch and vent, I’m happy to offer an open and supportive ear. I hate all of the “your suffering doesn’t count because mine is worse/yours could be worse” crap that I hear other parents telling each other when we’re talking about things that are hard, and I know that kind of stuff is just as rampant when it comes to talking about chronic illness. I wish it weren’t like that.
Yeah, I just don’t know why there’s “competition” in suffering, but there is. It’s so frustrating. Thank you and hugs right back.
Jo, thank you for posting this. Thank you for being angry. I’ve been so angry for months now. SO ANGRY. And it went from being angry at the disease to being angry at people. Angry that people ask “are you feeling better yet?” Angry at people for saying “you’re such a fighter.” Angry beyond belief that people pretend to themselves that my good days are good. When I was out a few days ago, someone in a group of people told me “but you’re strong.” My response was “it doesn’t make you weak to die from cancer.” Silence. Radio silence. And you know who was the asshole then: me.
I have more friends than most people. Probably because I’m kind of a pushover, I’m fairly helpful/have good ideas, and I’m an extrovert who volunteers for anything. So, lots of friends, right? Except, I’ve lost so many. A third of them. Maybe a half. (I know, I know – “then they weren’t real friends” – thanks Socrates, the years of apparently false, one-sided friendship makes me feel LOADS better.) Best friends who kept telling me that worrying would make it worse, that the cure was being optimistic and smiling. And when I refused, when I refused to plaster a smile on my face so that everyone around me could pretend things were fine, and I could stop being this inconvenient, sad, pathetic, sick, dying hassle in their lives, they left.
And it hurts like dying.
My best friend of 24 years, whom I haven’t seen in years, was less than two hours away and didn’t tell me.
It hurts like dying.
I have new hobbies – I learned how to crochet, I play board games a lot, I found new gluten-free flour that is amazing. I’m more than a diagnosis. It’s possible to acknowledge the horribleness of the illness and still talk to me like a person. I’m still in here. I am.
I’m not here for you to pity. I’m not your inspiration. I’m not strong, I’m not weak, I’m not brave, I’m pretty fucking afraid, I don’t need to just smile, I’m not “going to be okay,” I’m not “bearing my burden.” I’m not a mirror for you to see yourself, a sandbox for you to tackle your fears, or a showroom for you to try on a different life. I’m Jess, how are you?
Oh, JESS. You are so eloquent. I have very little to say that you didn’t already write beautifully. I am filled with rage at your so-called friends. I want to hurt them. So, so much love from me to you.