Saturday, July 16, 2016

Alternative Words

     I have been thinking a lot lately about what to say when people are sick and when. The world is such an achy place, and sometimes there is no clearcut right or wrong. My joints have been especially painful today, the result of excessive walking and rainy weather. I talked with a million different people at a reunion I attended, and while my health rarely came up in conversation, I began to think more about what it means to say "the right thing."

     In the past I've written lists of what to say and what not to say, and frankly I sort of regret that approach. I think it is all much more complicated than that, because people are complicated and people are the ones who say things. I also believe that there are very few things that are truly wrong in this context, there are just some things that are better than other. I am afraid that by unintentionally creating rigid rules I may have contributed to the isolation of people just trying to support their friends.

     But realistically, I know that many people find posts like these helpful, because they want to say the best things possible at the best time possible. They are a beautiful mix of perfectionists, concerned friends, and outsiders who just want to make things better for their friend. Being a chronically ill patient does not mean that I never feel at a loss for words, either. It is difficult to know what to say to someone when they are confronted by a daunting diagnosis or relentless symptoms. What do you say to someone who is vomiting so frequently that they have made a bed out of the bathroom floor? How do you respond when a friend's prognosis is grim? I do not have all the answers. My hope is that this post will be informative and constructive despite my limited experience.

What People Say: "How are you?" 
What Is Better: Anything more specific 
Why: Some days I don't even know how to start with an answer to the friendly "How are you?" My only indication of how deep you want me to go is how well I know you, and that can be a tricky line to define. Do you want to know about how upset falling in the shower made me, or do you want me to muster up a smile and assure you that my lungs will keep breathing for you to obligatorily ask me again next week? If you want your friend to say that they are fine so that the conversation can move on, then this is a perfectly appropriate question. And sometimes, a quick response is what you want, and that is okay. But if you actually want to know how a sick person is feeling, your questions are going to need to be a little more specific without being nosy (and that's all about intention, not words). For someone like me, with a joint condition, you could ask "Are your knees hurting?" or "Are the medications helping?" For someone who recently underwent surgery you could ask, "Is the incision site painful?" or "Are you feeling better or worse than when I last saw you?" Really you can just make these up, and you will learn much more than you would by asking the more common but more vague question.

What People Say: "I hope you get better soon." 
What Is Better: "This sucks. I'm calling you tomorrow to check in." 
Why: For chronically ill patients, it may get better or it may not. But we do not need the pressure of feeling obligated to get better. Honesty is best, particularly if you are close to the chronically ill person. The assurance that a friend will be there the next day (it's not always physically possible but we live in a connected world) is comforting because it crushes the assumption that people can only handle our unpredictable illnesses in small, infrequent doses. "I hope you get better soon" is a nice sentiment, but the alternative holds more weight.

What People Say: "Call me if you need anything." 
What Is Better: "I'm walking you to class tomorrow, text me tonight so we can coordinate outfits." 
Why: This is actually something a friend said to me once, and I felt so #blessed. The truth is that we will probably never call you, because literally everyone hates that. If you want to help when we are in pain, call us. Even better, just be a little assertive and make it fun somehow. Was coordinating outfits with my friend a blast? No. Did it make the walk to class better? Strangely, yes. I suppose it just made me feel like she was having a bit of fun in a not-so-fun situation, which relieved my guilt over not being able to withstanding a simple high school hallway trampling. Further, she seemed more concerned about the outfits than about walking me to class, which assured me that it was not a big deal to her and that she was committed to helping. Obviously you may not be in a situation in which the alternative I provided is ever remotely useful, but we all find ourselves in circumstances in which adding some peculiarity can create a funny memory rather than a disaster.

What People Say: "I'm tired, too." 
What Is Better: "I'm really sorry I can't relate to you on this."
Why: Honesty. I understand why people try their very best to find points of commonality, and in fact I think it is an admirable and empathic thing to do. Yay for being human! But it can also be painfully minimizing to someone who is dealing with a chronic illness. It won't horrify us if you admit that you are unable to relate to our situation - we already know.

What People Say: "You just need to get up and get moving." 
What Is Better: "Would you rather go for a walk or stay here?" 
Why: Getting up and moving makes a lot of people feel better a lot of the time. When I have a cold, I do so much better if I am able to get out and about a bit. I crave the business and exercise of the mall, or the chaos of high school hallways, or long walks in public spaces where I can pet strangers' dogs. My mind feels numbed by a stuffy nose and hoarse cough; the only path toward reconciliation with my ailing body seems to be reuniting myself with the outside world. But the connection between moving around and feeling better does not always ring true, and while it may help you with your ailments, a chronically ill person is the expert on their health and can usually sense what will or will not be beneficial. While "You just need to get up and get moving" is intended to be encouraging, it can come across as accusatory, plus the person who says it rarely has any medical credentials. As for the alternative, providing options is almost always a good thing, and the A/B choice helps with clear communication, especially when someone is in a lot of pain.

What People Say: "How are you feeling?" 
What Is Better: "What does it feel like?"
Why: It eliminates the "fine" response, and 50% of the time I am able to think of a humorous way to describe the pain. You will probably learn more, your friend will be glad to finally answer a different question, and you may hear a creative response that makes you laugh or cry or both.

What People Say: "It's going to be okay." 
What Is Better: "I'm going to be here, no matter what." 
Why: I really struggled with whether or not to include this one, because a well-placed "It's going to be okay" from someone you know really well can be an absolute lifesaver. There have been a couple times when it has been exactly what I needed. So I do not believe in banning the phrase, but I do believe in using it sparingly and considering the alternative first (which applies to all of these phrases, actually). Sometimes "It's going to be okay" feels kind of useless. If it is going to be okay, then is my current suffering illegitimate? How do you know it is going to be okay? Is it going to be okay with just with you, since you are leaving in an hour, or will the okay-ness extend to me as well? But I really do not think you can ever go wrong with a "I'm going to be here, no matter what," because, if you are genuine about it, it is a lovely statement with the ability to concisely but effectively promise that even if things are not okay, we will not be abandoned or forgotten.

What People Say: "You seem to be feeling much better now." 
What Is Better: "How does your pain now compare to your pain earlier?"
Why: Making assumptions about how someone is feeling is just not generally a helpful thing, especially when most of us basically have degrees in lying to people and making them think we feel better than we actually do. Asking questions is always better than tacking your assumptions on a person, and I think people assume that we must be afraid of questions when really we just wish that everyone would stop making up answers in their mind.

What People Say: "Do you need an icepack?" 
What Is Better: "We have an icepack here ready for you to use." 
Why: If we have to answer "yes" to needing something, it makes us feel like an inconvenience, particularly if this is a frequent thing given our situation. Plus, what if I say "yes" but subsequently learn that you do not actually have one and that you have taken it upon yourself to go out and purchase one? That would be sweet, but it would make me feel terrible, and I would miss you during your venture out into the commercial world. Knowing that you have something prepared is comforting. One time I was working away in a class during my sophomore year, and we had a student teacher who was leading the lesson. I felt awful that day and had just barely stumbled into class (sophomore year was rough for my lower joints), but I refused my teacher's offers to retrieve my wheelchair from another classroom because I felt like it would be a burden. Little did I know that while I was doing my best to concentrate on the material and not lose my mind, my teacher went to get the wheelchair without telling me. I only found out at the end of the class, and my teacher did not make a big deal about it, but it was a real lifesaver and I will always remember the relief and gratitude I felt when I saw it there. The moral: if you think someone might need something, let them decide whether or not to use it rather than whether or not to burden you with it.

     Hopefully this is helpful. There are no exact rules, just guidelines that I've illegitimately created as a way of trying to stumble through life with arthritis. The bottom line is just give hugs, hold hands, and cry a lil' bit. It is not depressing, it is comforting. Silence is okay, too. This is going to be a super strange comparison so bear with me, but the other day I was thinking about how whenever I am feeling poorly, our four family pets always seem to sense it. Instead of whining for extra food and attention with their sarcastic meows or irritated barks, they just sit with me and nap with me. They never talk or try to magically cure me. They just roughly match my state and stay close. I'm not saying to be more like a dog, but... I think there are many areas of life in which if we were more like our beloved canines we would be better off.

     You do not have to be an eloquent speaker or quick on your feet to be friends with a chronically ill person, you just have to be compassionate. Go and screw it up. Go and learn. Go and be brave.

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