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 chronicpain, 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 chronic pain patient!

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…

Sometimes we can't see the forest for the trees, sometimes that's because of the labels we've been given

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.  How do labels define us? I no longer want the label of 'chronic pain patient' I am just a human, who sometimes snowshoes

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.

Pain is just a part of my life, one experience among many experiences. Those other experiences deserve much more of my time, attention, and energy.

Life is chronic, if we’re lucky ;)

As always, thanks for reading folks! That whole goal of mine to be more concise, well, yeah, I’m still working on it. Hope you enjoyed the post, though, and as always, I’d love to hear your thoughts and experiences. 
Do you feel that labels limit you or the people you work with who are in pain? What do you think of the terms chronic pain or persistent pain? What about the word patient? Are there other words you prefer? Stubborn pain? Irksome pain? Client? I don’t know the answers, I’m curious as to your thoughts on the matter.

If you haven’t read my first two posts after discussions with Simon, here is part 1, where I talk about how I was able to challenge some of my fears and beliefs surrounding the strength and capability of my hip, and part 2, where I talk about how even though I didn’t follow the plan we had devised, I still succeeded because my thoughts and beliefs had changed, and my pain along with it.

Thanks folks!





8 Responses to "Labels, narratives, identity, and chronic pain"

  1. I just wanted to say YES to about every paragraph- you spoke so clearly to my various experiences and thoughts.

    Such important explorations, and through the lens of your own experience, you can ask these questions nonjudgmentally.

    Working on my cp writing project last year, I kept wondering if I had pain to feel legitimate. ( by the way it’s on hold, I am back working for hospice 4 days a week and loving it. )

    • Kerima, it’s so wonderful to hear from you! Thank you for the kind words and for sharing your thoughts and experiences, it means more to me than you know. These are important explorations and I don’t want any of us to be afraid to explore them.

      I am so happy that you are loving your hospice work, my grandfather is on hospice and I am so grateful for the services and people that hospice provides. My mom is his primary caretaker and it is comforting to know she has help.

      My book has been on hold, too! I started volunteering last fall for the National Sports Center for the Disabled here in Winter Park, I am loving it and my focus has shifted a bit to helping athletes with disabilities. It’s been incredibly rewarding.

      Thank you so much for leaving such a wonderful comment and for all that you do, Kerima!

  2. The onset of my injury happened when I was 5 months pregnant (1st and only child). That was 2.5 years ago. I took on lots of new labels (injured, preggo, new mother, dependent wife, patient who isn’t really getting better, generally incapable). I was also losing lots of labels (healthy, independent, energetic, athletic, fit, motivational, physiotherapist, strong, tough, and at times I have felt that I was even losing my mom label, as my abilities became more and more limited).

    As I write this, I realize maybe these aren’t labels, but it’s definitely my perception of myself and how I think others are seeing me.

    My original injury was diastasis rectus (separation of the abdomen) and SI joint dysfunction. I haven’t been diagnosed with chronic pain yet, but I’m becoming certain that it is a huge component.
    I haven’t fully accepted my injury yet, but I’m getting closer and closer. I’m learning to not be ashamed of what I can’t do, I’m learning to listen to my pain alarms and not to push myself just to prove that ya, ‘it’s that bad” (whatever IT, the injury, is).

    Reading this post I am seeing that it could be a good thing that I haven’t yet labelled myself with chronic pain. I feel like I’ve been trying to find a group with who to identify (fibromyalgia? diastasis, pelvic pain with pregnancy, or will I get a diagnosis of MS, ALS, or myasthenia gravis). I’ve been feeling like it has contributed to my sense of feeling lost, of not having an identity, and to more isolation.

    Thanks for shedding light on the negativity of these labels, or more so the weight and perpetuating nature of these labels. That aspect of badassness and a sense of tribe is kind of what I’ve been looking for. I want to know what it is that I’m fighting against.

    I guess it’s more true to accept that I am still Kyla. At present I have bits of several conditions but that I don’t fit into a box, which is actually what is allowing me to keep my own identity. I have parts of my old identity that are on hold until I have a chance to re-visit them. I am also shedding parts of myself that no longer serve me (self-doubt, shyness, negative self-talk, guilt and shame, striving for perfection, judging myself and others, denying emotions, denying my parts of my womanhood, trying to please others, worrying what others think, avoiding conflict, and I’m sure there’s more).

    My injury has been a catalyst to all this internal growth, and maybe I’m better off without a medical label for it all.

    Thanks for the insight and sharing your personal story.

    • Kyla, thank you so much for taking the time to share your story and your thoughts with us, your insights and perspective are valuable to anyone who is dealing with similar thoughts and feelings.

      It is always helpful to realize that we are not alone in some of these struggles with pain, with labels, with identity, with finding purpose and meaning right now rather than looking back to what we once were or worrying about what’s to come. I think our perceptions of ourselves do get thought in labels, so to speak. Labels aren’t inherently bad, but I do think they become a problem when they become fixed and inflexible, and when we become (or feel like we’ve become) confined within them.

      On the flip-side of labels, which seem finite and confining, is the uncertainty that surrounds pain and illness. Uncertainty can be much more difficult to deal with than having a diagnosis and sometimes it becomes a matter of trying to be ok with some uncertainty rather than trying to be ok with the diagnosis, if that makes sense. We may never have all the answers so it behooves us to be able to still live our lives as fully as possible without them. It doesn’t mean we stop searching, it just means we don’t put everything on hold in the interim.

      For a long time I felt like I had to wait for my pain to be gone before I could get on with living. I was in a holding pattern and the uncertainty and anxiety it produced were unnerving. But over time I learned more and more about chronic pain, particularly, and that helped me to understand that it wasn’t the pain or the diagnosis or the label that were so hard to deal with but that it was the effect those things were having on my life.

      So I wanted to shed the labels and stop focusing so much on the pain. I came to a place of acceptance that this was my current reality and that none of us can predict the future so that making the best of my current reality, being present and pursuing what was meaningful to me right now, was my best way forward.

      One of my pain heroes, Bronnie Lennox Thompson (an occupational therapist in New Zealand), talks about living well with pain and uncertainty and how if we can do that, if we can focus on the living more than the pain, then no matter what happens were good. If the pain resolves, we already have the living well part down. If it doesn’t, we still have the living well part down.

      It’s easy to say these things but much harder to live them, it took me a long time. But I hope that by sharing my reflections and experiences, others, like yourself, will share theirs so that we can all see that we’re not in this alone and that there is a way forward, though it may not be clearly defined. And we can all help each other to keep advancing along that path and enjoy the journey along the way.

      Thank you again for sharing your story and kind words, you have no idea how much they mean to me.

      If you have any questions or would like suggestions on possibly helpful resources please let me know, I’m happy to help in any way I can.

      Gentle hugs,

      p.s. here are some of my posts that might provide a bigger picture of my experience…
      acceptance: http://www.mycuppajo.com/acceptance-it-doesnt-mean-giving-up-or-giving-in/
      uncertainty: http://www.mycuppajo.com/pain-and-uncertainty/ http://www.mycuppajo.com/knowing-what-pain-isnt-2/
      language and meaning: http://www.mycuppajo.com/meaning/

      • Thank you for taking the time to give me even more direction. I’m also in the process of setting up an appointment with Greg Lehman.

        • You’re most welcome, Kyla, I’m happy to be of help in any way I can.

          I was at the San Diego Pain Summit last week and Greg Lehman was one of the presenters, I have been following his work for a while and it was great to see him in person. He is incredibly smart and very up on current pain science, he’s also funny as hell, so I think you’ll have a very positive experience and that he’ll be able to help you a great deal. I would love to hear how it goes!

          Thank you again for taking the time to leave comments and share your thoughts.


  3. Hi Jo Always enjoy your articles.As a therapist I think the seismic changes in the Pain field are actually being led by pain sufferers who are wising up to sub standard treatment.
    I had a thought this morning before reading this blog that the word that sums up so much is “agency”- the sense of control of ones own volitional actions in the world.I feel that pain can rob people of their once solid sense of ” me-ness ” perhaps the one solid thing in an uncertain and at times frightening world.
    The great but difficult to read Karl Friston says humans are in the business of gathering data from their environment that makes a case for their own existence.I think pain plays with this- in our DMN and is a difficult journey back to trusting in your solidity.
    Philosopher Thomas Metzinger says the cognitive revolution bought us the ability to foresee our certain death and we have been trying to heal ourselves ever since.Pain allows us to dip our toes into the abyss and that is both unsettling but ultimately can be an opportunity for deep learning.
    Look forward to your next blog and your photography may be good but be proud of tour ability to write so well for so many.

    • Thanks so much for your kind words and thoughtful comments here, Graham. Your thoughts hear echo some of my own. There is a loss of self cohesiveness with ongoing pain, that “me-ness” you speak of. Many of us feel like different people or that we are not ourselves, which is very disorienting and unsettling. As you say, the one solid/certain thing in the world, the ‘me’ of me, is suddenly uncertain.

      Pain has been the greatest education I’ve ever received. I’m grateful it became an opportunity for deep learning for me, and continues to be so as I try to make sense of it in retrospect, because that is not the case for everyone. I am one of the lucky ones.

      Thanks again for such a thought provoking reply. I’m currently reading Man’s Search for Meaning as well as Behave, so you’ve given me much food for thought with those texts as backdrop!

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