You don’t look sick

pain-faces-web

Recently my pain clinic posted a video asking patients how they want their lives to be remembered, it seems we have choice between “she was such a kind person, but oh, how she suffered,” and  “she lived her life to the fullest!” I guess the answer is supposed to be #2, all made possible by the clinic’s amazing treatment plan. Don’t I wish the answer was that simple, what kind of idiot chooses answer #1?

It is hard for people to know how to approach me. One of the most common compliments I get is “you don’t look sick!” I suspect they are scrutinizing me; trying to connect the person I am here in my blog with the person they see everyday running around with my kids. I’m not sure what a person with chronic pain looks like, maybe those faces on the pain scale? You have to watch pretty carefully to catch my “tell.” My weekend looks just like anyone’s: my husband works on Saturday and I take the girls to swimming lessons, shopping, errand running; Sunday is church and some weekend fun at the zoo or park. We love our family movie nights at home, or a dinner splurge out on the town. There isn’t time for illness, so I do subtle things to make life possible: like taking meds though out the day to keep the pain and nausea at a reasonable level (what a concept); I use a stroller for my little one and her daddy carries her more than I do; I sleep-in when I get the chance, leaning on my remarkable husband to wake with the girls; I am beyond exhausted at the end of the day, far more than I should be. But, most days, I’d rather end it in absolute collapse, than spend it on the couch waiting for my life to return.

It is easy to discount my pain by conceding that if you can’t see it, it doesn’t really exist. I further facilitate that notion by living, for the most part, as though it doesn’t exist — it is just easier on relationships.

I had an officemate who would notice a tell I wasn’t even aware of: I would hold my breath at my desk when my pain was ratcheting-up. She would notice that I wasn’t breathing and say something simple like, “it must be bad today.” I am glad, and proud in many ways, that I do not look sick, however, the unassuming way she acknowledged my illness was such an unusual kindness. It made it easier for me to keep on pushing, just because someone acknowledged what was really happening to me.

If I have learned anything throughout all of this, it is that we need to be better at acknowledging each other’s pain, without judgement or comparison. So, I guess my answer to the clinic’s question is: she lived life to the fullest, because she had love and support all around her.

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4 responses to this post.

  1. Oh how glad I am to read this today. I have been struggling with this so much lately. (my last blog was based on this same “what am I supposed to look like when I am sick or in pain?” concept) and to be honest I still haven’t figured it out. I have an amazing friend, who can always tell when I am hurting, even when I don’t say, and a co-worker that has pointed out an unknown tell of mine. Which makes me feel like these people actually do see my pain. Most people don’t see it though, and while I am proud that I am not a ‘woe is me, this is so awful’ kind of person (because even I would get sick of me) I find myself sometimes feeling so lonely, just wishing, for a moment, someone close to me could be in my shoes and understand-truly understand how hard I work to live life off the couch. I too, want to be remembered as a happy, lived her life to the fullest kind of girl. But I also want people to know that I was strong, and brave and I put my illness in the back seat where it belonged, even when it fought it’s way to the driver seat. Does any of this make sense?

    Reply

    • That makes all the sense in the world. I love the backseat/front seat analogy. It is easy to understand why people just don’t get it or see it, but that doesn’t make it easier. I think we just want our lives to be seen as they are, our fight to be acknowledged.

      Reply

  2. Oh how I get that all the time. Talk about a challenge to the validity of you condition with every comment. I have Dazzle now, my Mobility Assistance dog, and even though I walk with a cane I still get, “Are you training her?” No people I have MS and chronic pain and though I can fake it doesn’t negate that fact… sigh. I hope everyone reads your well worded blog!

    Reply

  3. I am so sorry to hear that Beth. Really not sure what people expect to see, but it certainly has taught me a lot about avoiding assumptions. Dazzle sounds amazing! Hope you are having a good day, and thanks for the comment!

    Reply

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