Chronic Illness and Us:
PART IIB: Helpful v. Unhelpful.
One of These Things is NOT Like the Other
Here we are, back to our series on Chronic Illness and Us. If you ask any therapist, they will tell you that messages that are positive are more effective than negative ones. Interestingly, negative messages, when imparted with a tone of positivity, fare better than positive messages delivered in a negative tone.
Let’s use that as a jumping-off point to the use of humor in imparting negatives. The use of humor, it’s been shown, can mitigate the negative reception of a negative message. Humor is also effective when used as a persuasive tool. So this article will be, to the best of my ability, a knee-slapping, otter-licking, barrel of hee-haw-belly-chortling guffaws (with the pragmatic and cautionary insertion here to please avoid reading whilst drinking a hot beverage.) Or it might not be funny at all, in which case, screw you. Kidding.
I’m not going to cite any of the studies w/r/t/ positive v. negative info-nugget sharing I read because you can Google and I don’t give a shit if you believe me. Plus, I read all of the studies on the Internet, so they must be true (this is clever foreshadowing for later in the article! Keep reading!) Also, I want to get to the fun part, which is delivering a message, one I hope you, my reader, will hear so you can learn how to interact with someone who is suffering from an illness, be it chronic, serious, temporary, etc., without being a dumbass.
My intent is not to offend, although my language might be offensive to some. If adult language is offensive to you, then I would like to invite you to NOT be offended by adult language today. That’s right — you get to be free of the stick that’s up your ocular/anal canals, and you get to read naughty word-bits today without getting offended! It’s like a cuss-word hall pass from God! How exciting! (How dare I speak for God, you might exclaim? Well, I’ll tell you how I know He’ll give you a cuss-word hall-pass today: I wrote the words, so I’m the one in trouble. You’re only reading them because you want to learn how to be a better person, right? God wants you to be a better person. He doesn’t want you to be a dumbass. It says so right in the bible, I think, around chapter and verse, uh, Ephesnumberuthlevitc-ish 23:99 or something. Spirit of the law, not the letter, here, okay? Carry on.)
Now, I want to assure you: we are ALL dumbasses. Yep. All of us. We are ALL guilty of being a dumbass at one time or another w/r/t another person’s stuff. To prove it to you, I will share one of my shining dumbass moments from my past.
A very dear friend of mine and her husband had been trying to conceive for over four years. She was extremely fragile about it and they were desperate. They were in the beginning stages of professional fertility intervention, when, at lunch one day, I came up with this memorable little piece of UNhelpful cow shit that, I’m sure, just made her day twinkle with joy:
“You know, maybe, on a deep, unconscious level, your body isn’t allowing you to get pregnant because you simply aren’t ready to be a mother yet.” (I am cringing with shame as I write out my stupidity in black & white for the world to read.)
To her credit, my friend…well, I don’t remember how she reacted. I hope it involved an eyeroll and a quick exit from my company so she could flip me off.
Years, and for her, three children later, (two adopted, one conceived by her and her husband — weirdly a few months after she adopted the two little girls), I apologized for my blunder. She said, “You know, I couldn’t be mad really, because I heard that, or a variation on a theme, from everyone. ‘God doesn’t want you to have a baby right now.’ ‘It isn’t the right time.’ ‘Your body will know when it’s time,’ etc. So your comment was in line with everyone else’s. It was frustrating, but I got used to it.”
She got used to it.
She got used to people patronizing her, being condescending to her, telling her what her body/subconscious REALLY wanted, what God’s will was for her…I could go on. In short, she got used to dumbasses. But here’s the point: all of those people, every single one, even this dumbass right here, only wanted to do one thing, which was help.
However, what we think is helpful is sometimes not the experience of those we are foisting our help ONTO. And no, the Golden Rule doesn’t apply here. Don’t “do unto others as you would have them do unto you.” No. Just because a Pop Tart makes you feel better doesn’t mean your sick friend, puking over the toilet after chemo, wants a fucking Pop Tart. See how flawed that Golden Rule logic is? Yah.
So, do unto others what others want done to them. In the first two installments of this series, I spell it out pretty clearly what we need: listening ears, open hearts, and a willingness to help how, and when, you can. So onward to the DON’T portion of this series.
The Helpful Help Given Helpfully That is So Incredibly UNhelpful, it Actually UNhelps Way More Than Helps
Interpretive Verbal Dancing
Like the interpretive dance performance your new poet-cum-artist girlfriend insists you go see late on a Saturday night, (explaining that the performance is an “exploration of existential crises if human beings realize that gravity is actually the ass of God sitting on us,”) your personal interpretation of our illness has no meaning, will give us a headache, and will cause us to want to throttle your neck, or our own, in exasperated boredom with a wave of your well-intended, but pointless attempt, to attach meaning to my illness.
Human beings are terrible at being in the dark. That’s why we like light. We are terrible at not knowing something. If we don’t know it, we either try to learn it, or…we make shit up. I want to discuss the “making shit up” category. Here are things commonly said to me, and to others, who are dealing with illness, that, as far as I can tell, comes straight out of the helper-y helpers anal cavity:
“God is testing you.”
Okay, first…what? WHAT??!! Why is God testing me/him/her? Is there some kind of quiz we aren’t aware of coming up later in life? A test so that later, if a friend has cancer now, they can be really good at Jeopardy! and maybe a question might come up eleven years from now, like Alex What-the-fuck-ever might say, rhetorically, “You are unable to get it up and your health and life are totally screwed…annnnd Sherry, for ten-thousand.” Ah, but Sherry won’t know the answer, will she, see, because God didn’t test her, see, so we will know the answer, and we can screech aloud from our tatty couches while eating Doritos® (Cool Ranch), “What is chemical castration!” That’s why God is testing us! Isn’t it all so clear, now?
Seriously. First of all, Person-who-is-not-ill, you have no idea if God is testing me. So while you think this is helpful, what it communicates is a misguided attempt to a) explain something you find unexplainable/frightening/tragic, and b) make yourself feel better by thinking God is going to take care of it for me/her/him. Unless you’re 100% positive your sick friend feels the same way, don’t say it. Even if they DO feel this way, let THEM say it.
Oh, and also? Your friend might be an atheist like me, or a believer who is seriously blaming God for the whole thing, so really, just go ahead and side-step that whollllllle landmine.
“Maybe your body is trying to tell you something.”
Why, yes, I think it is. I’M SICK, I HAVE AN ILLNESS/DISORDER, Dumbass. Read the above paragraph, and replace the word “God” with “the Universe.” Additionally, you are inadvertently blaming us for our illness. It’s a judgement on everything from our beliefs, lifestyles, to our thoughts — oh yes, there is a significant population out there who think our thoughts make us sick ie: “You have ovarian cancer because you secretly reject your own womanhood.” These types of comments are condescending and hurtful. We already blame ourselves, even though that reaction and emotion is blatantly faulty and has no basis in logic.
We feel guilty for putting our family through it. We feel guilty we can’t work anymore. We feel guilty our marriages have changed considerably, and most of the time, not for the better for either of us. We feel guilty, all of the time. And it’s irrational, and that’s what you should be telling us if we do blame ourselves in your presence. Reassure us that our illness is not our fault. Tell us for whatever reason, we are sick and it sucks. And then what? That’s right: “What do you need from me? How can I help you.”
There are a gah-zillion reasons why we developed our particular brand of yuck. We don’t want, or need, to hear why YOU think we’re sick. We may or may not know ourselves. We are going to find out with the help of our doctor, and with his or her help, information, research and soul-searching on our parts, we may or may not figure it out. But we don’t need your (especially religious or spiritual) interpretation.
“Everything happens for a reason.”
My illness might make the people around me better people. It might teach them some lessons, and might do the same for me. Or, it might ruin my marriage, my career, turn my kid into a water-tower sniper, and make my cats the first-ever indoor feral cats known to man. YOU DON’T KNOW. Right now, I can’t think of one good reason why I’m sick. I can choose to spin it in my own mind in a positive way so I can make it through a day, but I don’t need you doing it for me. Which brings us to:
Mr. and Ms. Fix-It
You cannot fix us. Unless you have a miracle cure in your handbag, (we will address the Millennial Snake Oil Miracle Cure a.k.a. Marijuana, in the next installment, don’t you worry your drug-addled little heads about that), you cannot fix us. You can’t cure our cancer, you can’t remove our depression, you can’t change the clusterfuck in my basal ganglia with your words. I cannot stress this enough. I can bold, underline, italicize and try and add a GIF to underscore this, but please — pay attention:
There is a fine line between having a positive attitude, and trying to FIX us with “positivity.”
First, don’t tell us how to feel. We can feel however we want. We are allowed our feelings. Again, if you find we are “living” in anger, set boundaries for yourself, but allow us to feel anger and validate our feelings. We feel grief. As long as we don’t “live” in it, validate as per PART IIA.
Don’t try and minimize our illness. My friend, J, actually had people say, “Oh, it’s only prostate cancer? Oh, whew, you’ll be fine, then. My third-cousin’s uncle’s brother’s poodle’s fiancée’s nephew had that and…” NO. To us, our illness is terrifying. Stop trying to fix it by telling us, “You’ll be fine,” or, “Oh, that’s not too bad,” or, “Seems like everyone has that these days, huh?”
Do not try and “make it better” by telling us to have “an attitude of gratitude” (loath-shudder, right there). Do not pump us with positive-peppy-propaganda you’ve read on refrigerator magnets, bumper stickers, or on social media memes. Don’t tell us about your third-cousin’s uncle’s brother’s poodle’s fiancée’s nephew and how she had it WAY worse than us, so don’t we feel better, now? No. No, we do not.
I can’t prove this, but from personal experience, it is my belief that sick people will say your pep talk was helpful because we have been socially programmed to reject displaying, owning, or expressing unpleasant emotions such as grief. Many people don’t know how to deal with others’ unpleasant emotions, so they project their discomfort onto the other person through various and sundried pep talks in an attempt to stifle the person from expressing negative emotions so that THEY (the help-y helper) feels more comfortable. (Put that way, it sounds really shitty, huh? Don’t feel bad. We’ve all done it — we all do it. We want to fix, we want to help. But we don’t know how — hence, articles like this.)
Okay, so knock it off. We are human beings. We feel stuff. Lots of stuff. And not all good. This series has information on how you, as a friend, can deal with another person’s feelings — specifically w/r/t illness — in a productive way, for you both.
Now, your sick friend might say that shoving your bumper-sticker wisdom down their aural canals was indeed helpful, and will thank you, agreeing with you quickly and heartily, whilst swiftly changing the subject and/or faking a cramp and running away. We do not do this because you cheered us up, “fixed it” or made us feel better. We do this to shut-you-the-fuck-up-and-get-you-away-from-us-as-soon-as-possible. FYI.
If we have a chronic illness, one that will not be going away any time soon or ever, unless there’s some sort of cure discovered at some point in time, (and let’s face it, the cure for male erectile dysfunction is here, but there’s no cure for depression, cancer, or a number of other things that seem, oh, I don’t know, WAY more important to me than whether or not grandpa can get it up), so there’s a bit of cynicism w/r/t the medical “research” being performed by pharmaceutical companies, who are all about profit, not about cures and creating a well society. My two cents. We need listening, validation and comfort. We need genuine love and care. Again, I will say as a foreshadowing of the up-coming conclusion to this series: there are sick people who want to “live” in their illness. They are toxic and cannot be helped, no matter what. We are not addressing these types of individuals at this point.
Back to the help-y folks. Please don’t tell me I *seem* to be doing better, looking better, acting better… please do not assume. I might be putting on a brave face for you while hiding my pain, discomfort etc. because I am in public, or I’m putting on a brave face for you so you don’t have to deal with it during your visit.
My daughter recently got married and I had to attend the wedding (obviously, right?) I took extra pain-killers and had a bunch of caffeine so I could make it through the evening. A couple of well-meaning relatives (who only know I’ve been ill, nothing more) came to me and said how happy they were that I ‘looked like I was doing so much better.’ They seemed relieved, like “Oh, thank God we don’t have to worry about you anymore.” They had no idea how bad I felt; no idea that I was laid out, in bed, three days afterward. No, I am *not* doing ‘so much better,’ and at the wedding, I was barely hanging on. It would have been nice if they had said, “You look great, but are you feeling all right?” Or simply, “This is a lovely reception.” That works too. For me, it’s not all about my health, and I dislike being viewed through the lens of “sick.” I am a whole person, with lots and lots of pieces and parts and components of me that have nothing to do with my chronic illness. Like, for a night, being a proud mother of a beautiful bride.
Finally, don’t inform me, as if it’s fact, that I AM better, or must BE better, because “look at how well you’re doing this-and-that or some-and-such, or looking like ___,” or I wrote a “funny” on social media, so I must be better. If you don’t live with me 24/7, you have no clue how well I am doing or not doing. My condition affords me good days and not-so-good days and outright horrific days that are unimaginably difficult. Just because I penned a great poem one day or said a witty thing on Facebook does not reflect how I feel that day, nor does it give you accurate information about my overall condition, in its entirety, or for that particular day. Bottom line? Sometimes, even while in terrible pain, I will write amazing shit. I’m fucking remarkable that way. Don’t assume you know anything about the status of my condition at any given time. You want to know? Ask. I’ll tell you the truth. If you don’t want to know? Don’t ask.
Laughter is the Best Medicine
Talking about my friend, J again, I mentioned that he wrote me a hilarious email, detailing the horrific things he had to go through when they first discovered and diagnosed his prostate cancer. Now, being a Pun-Master Extraordinaire, I could have come up with a dozen ways to respond that included many-a hilarious guffaw-inducing things, by cracky. (See?) But I did NOT do that. Why?
Because there is nothing fucking funny about cancer. Often we (people who are ill) use humor as a social mechanism to mitigate other people’s discomfort with our illnesses. What I know and understand for a fact is this: J gets to joke about his cancer. I do not.
As I mentioned before, my illness is complex and difficult to understand. It’s tedious to explain. There are only a handful — at most — of people I trust to care enough or understand it. I reached out to one and told him.
He asked me about doing something at my house — I think painting or something, and I told him I wasn’t able to do that and I told him why. He made a joke about it, poking fun at what I had told him. Well, when it comes to humor, I have a pretty good sense of it, and much of it includes self-deprecation. But the thing is…there is absolutely nothing fucking funny about what I’ve been through and what I’m going through. Nothing. I promptly emailed him back and told him he was no longer invited over. I told him I’d let him know if and when I wanted to see him.
*I* am allowed to make jokes about my condition. No one else is. Period. Do not make jokes about my illness to me. Do not poke fun, however gentle, at my condition or symptoms. I get to do it, you don’t. If I poke fun at myself, laugh with me and tell me you love me. Don’t take it as a sign you get to jump on the “jab-wagon.” My humor is a way to help me cope, and to help you feel at ease. Your attempt at humor will make me feel like you do not respect the pain and fear and all of the other shit things I feel and endure almost daily.
My brother had testicular cancer. Lucky for him, it was contained in one testicle, which would not affect his life significantly when removed. He would still be able to function physically (it’s my brother so I’m not going to use the words “exual-shay” and “other-bray” in the same sentence because it makes me feel icky and not right in places in my head and subconscious), and he would return to a fairly normal life. While still recuperating in the hospital, my other brother, the elder one’s tennis buddy, came to see him. He brought him a “get well” gift: a new tube of tennis balls — minus one ball.
It was hilarious for two reasons: one, my brothers have sick senses of humor and they laugh at everything, and two, my older brother was going to be fine. Had he had both testicles removed, the joke would have not been funny (understatement); on the contrary, it would have been heartlessly cruel.
Be respectful. Follow our leads. Err on the side of caution when it comes to joking. There’s no cause, ever, to “make light” of a person’s illness. Jokes, perhaps, and only if or when; “making light” as a joke? No. Never, never and no.
Welp, I did it again. I thought I could fit it all in IIB, but I can’t. Therefore, let this section be henceforth referred to as IIB(1).
Fare Thee Well, All!
J.A Carter-Winward
Coming soon: Chronic Illness and Us:
PART IIB(2):
Helpful v. Unhelpful
To be continued…
