Labels, narratives, identity, and chronic pain

I have been thinking about the language we use with ourselves lately, particularly our self-talk and our labels. I’ve been thinking a lot about the words chronic, pain, and patient in particular. How does continually using, or hearing, these words reinforce our pain? Does being identified as a ‘chronic pain patient’ become an integral part of our identity that then makes it more difficult to change our pain?

I had been thinking along these lines for a bit when I had another chat with Simon Roost Kirkegaard, who seems to blow my mind every time we chat and seems to know how to get right at the heart of tough topics for me to address. He challenges the way I think, which I’m grateful for, and thereby changes the way I think, respond, and act when it comes to pain.

But though my thoughts, beliefs, and pain have changed significantly in this past year, I still thought (think?) of myself as a person with chronic pain. I was stuck in that way of thinking, perhaps unsurprisingly so as it has been my way of thinking for nearly 6 years. It was a well-grooved thought, a well-established belief. I couldn’t really see another way of thinking about myself.

Well, at least until my last chat with Simon. He very simply asked me if I was still in pain.

Are you still in pain?

Simple question. The answer? Not so much.

After thinking a bit, after all my pain was a ‘given’ so I hadn’t asked myself this question before, my answer was a qualified no.

No, I’m not still in pain. Though I do have pain from time to time, I don’t ‘have’ pain, I’m not ‘in’ pain.

But that was really, really hard for me to say. I felt like I was losing something by saying it, losing a part of me. It was hard for me to let it go, to try to think differently, to see myself differently. It was hard for me to be just a person, without pain having to be part of the equation or explanation of who I was, who I am. I was holding on to the label.

I’ve been through this before. It’s as though after leaving the fire department and losing my firefighter identity, pain took it’s place. I feel like my pain gives me purpose, just as firefighting had. I went back to school and earned my MS because of my pain, studied pain science because of it, started writing because of it, started volunteering because of it. So much of who I am right now is because of my experience with chronic pain.

Both being a firefighter and being in pain have helped shape me, have helped make me who I am today, but they are not me. I am not just a label.

I’d rather be labeled a decent photographer than a person with chronic pain :)

So why do I (we?) keep holding onto labels?

For me I think it’s because it’s hard for me to separate my purpose, which I believe is to help others with pain to live meaningful lives, from my pain.

And successfully living with a chronic condition and overcoming adversity can be a sort of badge of honor, a triumph, a bragging right of sorts. I used to think of myself as a badass when I was a firefighter because it was a tough job and one that I was good at, I think I wanted (still want) to hold onto some of that badassedness.

I want recognition of some sort. I want to explain myself. I want to be a member of a tribe. I want to be understood.

So I’m having trouble giving up identifying myself as being a person with chronic pain.

Will I lose my tribe, respect, feeling understood, by doing so? On the flipside, what weight does that label carry that I’m not even aware that I’m bearing?

I’m not alone in this struggle. I recently had a wonderful discussion about labels on my Facebook Page and met a 3-time cancer survivor, Francine Fowler. She has thought quite a bit about labels too, and rather than trying to paraphrase her thoughts, here are Francine’s own words:

“I remember when I “graduated” from my long term cancer support group. I didn’t want to be defined by the label “survivor”; I wanted just be a normal human again. (Well, as normal as any of us are.) Even though many of my current issues are from cancer treatment, I do better in my head when I accept that they are just regular issues that other people my age deal with. Labeling myself a three time cancer survivor can be a badge of honor and accomplishment but also a path back to feeling like a helpless victim. Double-edged sword.”

So it’s complicated, this whole being human thing. Especially being a human with pain, loss, illness, or tragedy, and who among us hasn’t had to deal with those things?

We all want to be heard, to be understood, without having to explain ourselves so much. A label is easier. We humans like to label everything, to put everything into neat little boxes. But that’s not what being human is; being human is messy, complicated, awesome business. None of us can be encapsulated by a label.

But being a 3 time cancer survivor is definitely a part of who Francine is, it was a major part of her life, it has made her who she is today. It is a badge of honor.

But that badge can be very heavy and limiting, too. That’s not all she is.

Our labels are not all any of us are…

I’ve been saying for a long time now that I am not defined by my pain, that I don’t need labels, that I am just a person.

I even wrote a post almost two years ago about how I was not my pain, that it wasn’t my identity. But here I am, two years later, and pain is still a large part of my narrative, my self-talk, the way I see myself.

So I’m trying to change my way of thinking about all this, and after being pointedly asked (challenged?) by Simon on the matter, I think I’m making progress.

On a side note: we all need that person in our lives to challenge our way of thinking, our beliefs, our paths. We can get stuck in a rut, a rut that becomes grooved so deeply we can no longer see a different way.

We can’t see the forest for the trees without a nudge sometimes.

How do I define myself?

Pain is something that occurs in my life, an experience. But I have many other experiences as well, experiences not characterized by pain, experiences by which I don’t identify myself by.

But I do identify myself with pain. It makes me wonder how much that constant reinforcement of pain in my narrative is detrimental to my progress, to my ability to change my pain, to live my life to the fullest.

Can I recognize that pain is a part of who I am while at the same time not having it as part of my identity, my self-concept? Where’s the balance of acknowledging chronic pain (or surviving cancer, illness, or tragedy) without encapsulating it into our sense of who we are?

Many things make us who we are: our childhoods, playing sports, our parents, our friends, our jobs, our hobbies, our travels, our families, our education, our partners,  our life experiences – but we don’t label ourselves with all of those things, we don’t include all of those things in our narratives of self.

And when we do define ourselves by one of those labels, we can get into trouble when all of a sudden were no longer that thing (athletes unable to play their sport, losing a job, losing a spouse or a child, etc).

So now I just want the human label, if I need a label at all. I’m a messy, complex, awesome human, just like all of you. We’ve all come through something or are going through something or will be going through something soon. We’re all in this thing together.

Words matter

Simon asked if I thought I had invested so much into being ‘the person with chronic pain’ that it had become who I am, if it had become how I viewed myself, especially in light of this blog and the book (in progress, ever in progress). I write about pain, I research pain, I talk about pain, so I am continually living pain, too.

And part of me (a big part) believes that my pain gives me ‘street cred’. It helps people to know I understand what they’re going through, that I’ve been there, too, that I get it.

But how much of my pain am I holding onto to serve that purpose? And do I need to? By reinforcing that narrative, am I reinforcing the pain, welcoming it back in, always saving a comfy room for it in the chambers of my mind?

It’s hard for me to find the balance, to figure out how to explain my pain experience without it defining my current self. But it’s time to. It’s time for me to change my narrative from being a person with chronic pain to a person with experience with chronic pain. I’ve been there, but I am not there now. But I still understand it. And I now have time for greater reflection and more meaningful insights because pain is no longer usurping all of my resources.

Part of me worries about that. But it also gives me hope that I can give others hope, too. The hope that their pain will change enough that they’ll no longer see themselves as a chronic pain patient, but just as a human: a complex, messy, awesome human, who sometimes has pain.

Because I am not this:

chronic: persisting for a long time or constantly recurring  (some folks prefer persistent, but it’s not much better: continuing to exist or endure over a prolonged period)

pain: physical suffering or discomfort caused by illness or injury

patient: from Latin pati: to suffer; bearing pains or trials calmly or without complaint; sick person under medical care

You know what I mean? How much have those words reinforced my pain neurotags, my pain loops, my pain over the last 6 years?

Reconceptualizing ‘my pain’

So I’m trying to conceptualize ‘my pain’ differently now. It’s not ‘my pain’ anymore, it’s just pain. It’s no longer a noun, it’s a verb (I pain, I don’t have pain). It is sometimes present, oftentimes not.  

My thought is that if I can somehow think of each flare-up as a unique pain experience, a new pain as opposed to my chronic pain, I might react differently, think differently, move differently, LIVE differently.

And I think this thinking is working. This week I had a flare-up, the worst I’ve had in a while. But I didn’t think of it as a flare-up of my chronic pain, I thought more along the lines that I was paining, just like a lot of other folks do, and that there wasn’t anything special about it.

And I went for a hike.

The pain improved a bit, but it was still there the next day. It was, in every quality, just like my old, chronic pain, but I tried to think of it anew, to be present with it without expectation, without ‘knowing’ what it would be like.

I decided to live with it in the present moment, rather than in the past or in the future. I tried to think of it as I would pain I’d get anywhere else, which I never think of in the same way as I do (did?) my chronic pain. 

I tried to think differently, react differently, behave differently. I tried to not worry so much or be bummed that it ‘was back’ or that it was never going to go away.

And I went snowshoeing.

The pain improved a bit more. I feel like I broke a cycle of sorts. Perhaps I didn’t. But it feels good to think I did.

The present

I have said for a long time that chronic pain doesn’t define me, but I don’t think I was completely honest with myself. Chronic pain did define me. The label gave me comfort, an explanation, a tribe.

But I don’t want the label anymore.

I can deal with the pain, but I no longer want to be limited by the label. I don’t want to be in that box. I don’t want to be neatly categorized. I want to be able to be whatever I want to be in the present moment. 

Now I’m working on just accepting whatever is right now, whether there is pain or not.

If there is pain, I accept it and get on with living. If there isn’t pain, I accept it and get on with living.