You don’t look sick

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.