Chronic Pain and Identity: I Do Not Talk About Spoons

A person with chronic illness, they say, has only so many spoons to get through a day. Each action, each sentence, each movement can take a spoon away, and when the spoons are gone, so is the energy, the ability, the strength left to face that day.

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I have grown more comfortable talking about my pain over the years. I talk about it commonly now, I give it breath, it is a matter of fact topic in my week. Yet I do not talk about spoons. Spoons make me feel like an impostor, like I’m claiming a story that is not mine.

My pain sits heavy and aching in my neck, my shoulders, my jaw, where it has lived for years and years. It was small at first, and easy to ignore, and then it grew and grew.

Now it has made a home throughout my nerves and muscles. It has had so long to expand in my body that it has remodeled, painted the Pepto-Bismol pink bathroom blue, planted perennial flowers, hung pictures on every wall. Its domesticity has been so insidious that I do not know when it moved in, or why, or how. I know it now better than my friends, better than my husband, for it is with me all the time, in every moment, in every joy and sorrow and scrap of boredom. My pain resides within me contentedly without fear; it knows its tenancy is permanent. It sleeps with me every night; it rises with me every morning.

I am a woman and society has taught me not to complain, so years and years built on before I started voicing the concern that this was not quite right. I spoke at first timidly, than louder and louder until I was singing a song of my pain, writing an opera about the ways I felt broken, pouring out my melody. I crescendo to a fortississimo, like Holst and his planets chanting about war, like Turandot singing for her freedom. I sing as I must to have someone notice me. Help me, I beg, something is wrong; good thoughts and music are not enough to make it stop.

I went through a phase in my 20s where I was convinced something was so not right with me that I’d joke darkly about not surviving until I was 30. I had no evidence to support this, none at all, but I was so young and so full of life - the pain residing in my bones persuaded me that it was death.

A journalist recently asked to interview me about my experience with chronic pain. Beforehand I tried to jot down a few notes, trying to recall all the doctors I’ve seen, the treatments I’ve tried, the thoughts I’ve had. My “notes” turned into three pages, over 1,000 words of my misery. I spoke to that journalist for 40 minutes. The article came out recently; reading it made me feel very strange.

But with all that, I am indescribably lucky. My pain is constant but low level. I may need to use a book holder to avoid agonizing my neck when I need, I may own every gadget and cream touted by Buzzfeed that’s supposed to reduce muscle tension and soothe my burning nerves, but I can live my life generally without any great trouble. I do not have many issues with fatigue, although I am often drained of energy and willingness to deal with anyone or anything. I can’t move my neck as far in any direction as I’m supposed to be able to, but there are no activities I explicitly cannot do. The adult gymnastics class I went to recently left me sore and hurting for days after, but I did it.

And thus because I am functioning decently, I do not talk about spoons. I do not usually refer to myself as disabled; I do not feel I have a right. There are so many who struggle more than I do. I often fear that by admitting I too struggle, in various ways, I may steal a status which is not mine, appropriate a life not my own, acquire the pity of others.

I do not want it, you know.

It makes no sense. I too, get tired sometimes. If pain is my longtime tenant, depression and attention deficit disorder are my neighbors - not always visibly present, but usually close by with a wave or an awkward conversation to remind me they’re there. On some days, all three will gang up on me and I find I cannot move forward or back, but stand paralyzed by my own body’s confusion and misery. I too, can run out of spoons.

Yet I fear to say these things, I fear to put them in these words.

I do not speak of spoons.