My Struggle With Three Simple Words

How are you?

Just three words.

Just three words silence my voice but incubate my thoughts.

The responses I wish to deliver get caught in my throat as I open my mouth to speak; I gag wordlessly without any outward signs of panic; I feel a glass wall erect itself to support and contain my stoicism while I suffocate. The words I want to use expand in my chest like air being pushed into an empty balloon, threatening to leak out of my mouth in a jumble of hot air and exhaustion.

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Usually I manage to push aside the wordlump in my throat so I can still breathe and respond in a socially acceptable way. I say polite things, or I say I’m not ok and try to change the subject. Or I stand there awkwardly, ashamed and lime-lighted, drowning in my reality until I realize someone is waiting for my next move.


I recently visited my alma mater, Meredith College, to attend one of our many quirky traditions. Every four years the staff and faculty give a fantastically energized performance of Alice in Wonderland. Alumnae are invited to the final dress rehearsal that becomes a reunion as classmates from all graduation years gather to wait for the doors to open.

I was excited to see all these people with whom I spent four fantastic years of my life. But I was also terrified.

I wore a fancy dress, heels, makeup, and my hair down. These were things I never did in college unless I was going to a dance or banquet; I attended many classes in my pajamas or in sweaty clothes directly from soccer practice. I wanted to pass as healthy tonight, so I overdid my appearance. And people noticed. And it hurt. It was a bad idea, but I’m a good actress. Or so I thought.

Many people I saw are my friends on Facebook; they see my updates and blog posts. They know how sick I am. Others not so much. But all of them asked the same question, because it is THE question we ask by default, “How are you?”

Often, it was followed by, “You look sooo good! So pretty, so healthy!” This parallels what people struggling with invisible diseases often hear: “But, you don’t look sick,” usually partnered with the unspoken, “So you must be fine.” In this situation I knew my friends meant what they said – I DO look good. They weren’t challenging my diagnosis. I knew deep down their intention was to make me feel better about myself; we humans do a pretty good job convincing ourselves that other people are healthy if we think they are.

But I got so tired of answering THE question. I knew many of my friends really meant it; they truly believed they wanted the full truth. And they had no way of knowing that assuring me how good I look triggered the weighty assumption that because I look good I shouldn’t be sick. And they can’t possibly realize how pregnant those three words are with meaning, and how unprepared they are for the real answer. I really wanted to say, “I hate that question because it reminds me how sick I am and how much you really don’t know the magnitude of my pain and how much it consumes me and how impossible it is to put all that and more into a six-word reply.” I really did want to answer their question and say that I’m performing tonight as much as the people on stage. I wanted to rip off the nice, pretty facade so they could see how much I was hurting. I wanted to give them a true monologue that would show the enormity of my daily struggle to find a life worth living. But I knew the situation wasn’t appropriate. Even being sick, I still understand what society has taught us about small talk. Small talk should not be big talk unless it’s good news. And I was raised to be a polite, southern gentleperson.

Unfortunately, I was terse with some of my friends, keeping my response to a strained minimum. I was bursting at the seams wishing I could fade into the background so I could escape these interactions. In some conversations I tried being abruptly honest. “But you look sooo good” was met with “But I’m not. I’m really not. I forgot my cane and my pillow and my ibuprofen.” I witnessed their brains sprouting legs to run the other way screaming while their body remained, waiting orders. They didn’t know how to respond; I’d silenced them. In nice southern fashion I attempted to bury what I’d just said with some artificially joyful comment or joke. I silenced myself so their comfort would return. Southern hospitality.

I’m really sick. Can we change the subject please? This is a fine line to draw. It’s fuzzy. Where’s the balance between finding out how I am and smoothly transitioning to talk about my favorite food or bikes or our favorite classes in college?

I wanted to scream. I kept myself distant. I’m no longer the role model who bounced around campus doing cartwheels and wearing silly outfits for St. Patrick’s Day, who sat for hours encouraging people to go far in life. I’m no longer the invincible student athlete and the full-of-optimism, care-free person they once knew. Why destroy it for them now? I am now an old, sickly, grumpy, distant person. And even though I wanted to be there, I was in a lot of pain and tired. And when the performance was over, I was too spent – both physically and mentally – to navigate crowds so I could greet my favorite former professors and staff. I was ready to leave. And I did.


Often it is left up to the person with the invisible illness to guide the conversation away from the sensitive stuff, but when everyone is asking THE question, it takes all my energy to just occupy space and stand obediently in a fog while my brain enters standby. Voices merge into one buzzing echo: “How how how are are you you you you?” It is like people are walking up to me with a handheld mirror. Instead of asking me how I am they hold the mirror up in front of my face and on it is written, “Hey, you’re sick!” People and their greetings become a reflection of my own insecurities, my pain, my worst fears. Asking me how I am makes it impossible for me to look into the future because all I see is myself and what I’ve been through. It’s a roadblock to conversation. I get stuck examining my flaws, unable to conjure up a phrase to change the subject, because when people hold up that mirror they hold it up until I convince them to put it down. I either drown or snap, losing any chance to move the conversation along, before walking away and internalizing the interaction to process later.

When people we went to school with see us, all they expect is a nice conversation about how amazing our lives are since we graduated from college 5 years ago. And without an amazing 5 years to share, I’m left with nothing but my deteriorating body that barely lets me out of the house.

I’m not my disease – I need a distraction from it, that’s why I’m here.

People care. But we haven’t, as a world, figured out a way to interact with those who will fight the same thing 24/7 for the rest of our lives. Most difficult things in life are temporary, not chronic. Grief eventually subsides, although it may be the most relatable experience. If you’ve ever lost a dear loved one, you may understand what it is like to prefer to stay home because interacting with happy people is too difficult. You probably know what it’s like to put on your ‘face’ to mask the pain, because it’s easier to have the lake damned and levees reinforced rather than clean up after a flood.


Those who’ve defied death like me are the people I know I can really talk to openly. When Jack calls my name as I walk by him, I know I can be brutally honest because he’s no longer in the wheelchair we believed he would die in three years ago. When Erin, who has defied all odds with a rarely detected cancer, and I recognize each other a few seats down, I feel comfortable when we seesaw between talking about our hobbies and the various methods we use to administer shots. When I go backstage to find ibuprofen and see my friend Cynthia, who lives with MS and now uses a scooter, I feel at home because she and I can joke about how much pain medicine I’ll need to get through the show; and when her son Austin says he has a full bottle of ibuprofen and doesn’t even bat an eye when I ask for twice the allowed dosage – I feel safe. These interactions give me comfort because I am not putting on a show and I don’t feel pressured to unpack all my feelings and condense them into one teaspoon. These people get it.  When they ask me how I am, what they really mean is, “Let’s dodge the real question for now talk about other things without needing to focus on how you really are, unless you feel like talking.”


For my friends now wondering what to say – how about: “It’s so good to see you” or “I’ve missed you.” Give me a good hug. If I feel like opening up, I will.

 

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9 thoughts on “My Struggle With Three Simple Words”

  1. I enjoy reading your blog. You are a master wordsmith! We had the opportunity to talk during lunch last november at the a.s. seminar in san francisco. Thanks for taking the time to introduce yourself. Jim t

    Liked by 1 person

  2. I’ve lived in pain since age 12, when my back would “go out” a couple of times a year and I’d walk bent over, in terrible pain for about 2 weeks. This gradually became more frequent and by the time I was 18, my lower back (SI area) would ache all the time. I had a daughter at 20 and a divorcee by 22. I worked full-time from age 15 until I was forced to stop working and apply for disability around age 47. Oh, and I was diagnosed with Ankylosing Spondylitis in my late30’s. At one time or another, all my joints have hurt, but mainly my lower back, spine, neck and shoulders are affected. It sucks. My family asks, but I don’t think they really want to know, especially my daughter, who I’m very close to. She just doesn’t like being reminded that I’m in pain all the time, or when I’m particularly bad. I guess I don’t blame her…she’s pretty empathetic but who can be like that ALL the time?

    Anyway, that’s my life in a nutshell. I’m not suicidal, but who WOULDN’T want to NOT be in pain all the time? I wouldn’t because of my family… my mother, sisters, daughter and husband. But I do think how old I’ll be when I die and most of the time, I hope it won’t be too long! It’s a hard thing to explain to someone who is not in constant pain. And who wants to hear about it all the time?

    So, even though they tell you to keep up your friendships, it’s a hard thing to do as your life becomes smaller and smaller.

    Thank you for your posts. Most everyone in a similar position can relate!

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    1. Thank you for your comment and for sharing parts of your story. I think the friends who stick with us are definitely worth keeping around. Often those friendships become closest with those who have experienced pain and can empathize.

      Liked by 1 person

      1. Thank you, Chari’s, for expressing so well what we so often feel. I do try to stay positive….after all, even my husband and daughter get tired of hearing if/when I’m hurting. It’s such an insidious disease…one day you’re hopeful and the next, you’d like to say “but I don’t WANT TO live to an old age…”. That just means even more years of pain. I said something like that to my husband once…and his reaction was to ask, not very nicely, if I was saying I wanted to commit suicide! Even worse, if my daughter, granddaughter, and husband would be so adversely affected, it’s something I MIGHT consider! Who wants to be in the chronic pain you speak of so eloquently, and continue to hide how much we hurt? And I’m by no means saying I plan to kill myself; just that it’s something I do think about. This started around age 12… I’m now 55…how long do we have to continue with all this bullshit? I had a “management” job at a large company…working as Assistant to the President…. I certainly didn’t WANT to stop working! I found myself less and less able to multitask the way I had! By the way, this is a subject I’d love to hear you speak more about…and I have to admit, I’m not sure how long I can struggle this way. You must experience the same thing.

        Sorry to go on…this is really the only forum I have to actually express these things. Right now, I just got approved by the AbbVie Foundation…. I can take Humira for a year and then reapply…and I get it for free. So, again, up and down feelings, hoping it might provide relief. Remicade helped, but ruined all my teeth, so I had to start wearing dentures at 53. And TTY he lowers don’t work… I can’t chew with them, so I haven’t been able to have my favorite – steak – for years!!! Sorry to go on, but thanks for listening. This really has been the only forum where I can express these feelings, so thanks for listening.

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        1. Thank you for sharing these difficult thoughts here Doreen. We do have a big struggle and the more we feel we can share our stories and be listened to, the more valued and valuable our lives will feel. Please, if you have suicidal ideation or plans, call a suicide hotline: 1-800-273-8255 This is the number to the Suicide Prevention Lifeline.
          And remember, please remember, you are not alone. I’m here giving us a voice, and you can use your voice too. It gives us our power and some idea of control back to us. Keep fighting, for YOU. ❤

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  3. My go to answer is, “I’m hanging in there.” It implies that all isn’t perfect and gives them an opportunity to inquire further if they really want to know, but is also lighthearted enough without being a lie to let us just move past that part of the conversation. It’s always awkward when a nurse asks me how I’m doing before we’ve even gotten out of the doctor’s office lobby. I start into my default Fit For Public Consumption answer before I remember that my medical professionals probably want the real answer. Not sure how many times I’ve said, “Good — wait, are you really asking? Because I’m not actually good.”

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