I’m writing about language…again! It’s because this year I have had the great honor to speak at a number of conferences, and it’s come up every time.

One of the most important talks I’ve ever given was at the Paincloud Convention. It was the most vulnerable I’ve ever been on stage, probably the most vulnerable I’d ever been in public period (including on these pages).

As I wrote in my last post, the month before Paincloud my friend Chris Caldwell had said that people learn more from our weaknesses than our strengths. That resonated with me, and I wanted to bring that to the stage in Oslo. My most read post, after all, prior to the one I wrote about Cognitive Functional Therapy, was on shame and resentment.

It was a post I was terrified to share, so deeply personal. So deeply human.

This stuff ain’t easy

Shame is not something that is easy to talk about. Feeling weak and unworthy are not easy things to talk about. Being resentful and angry are not easy things to talk about. But I was all those things, and for a long while.

I was ashamed, I felt weak and unworthy, I was angry and resentful.

Pain sucks. Losing so much because of pain sucks. Pain that doesn’t make sense, the life that it leads to that doesn’t make sense, is hard, difficult, scary shit to deal with.

Because that talk was so meaningful to me, I wanted to share some of the bits I feel are really important. Bits that I can’t talk about enough because they’re just so damn important.

I’ll ask here, as I asked at Paincloud, to please just listen, without forming judgments or responses. Bear witness. Be a compassionate presence, which is all you can be sometimes, and that is enough.

What you say matters

The words we hear from others, including you, become our own words. They become a part of how we make meaning of our experiences, a part of our belief system about ourselves, who we are, what we’re capable of. What we’re not capable of, who we aren’t. 

Over the years of my treatment I was told many things about myself. You may argue that it was told to me about my hip, or my posture, or my pain, or my status within the worker’s compensation system, but none of those things can be separated from me as the person. From me as Jo who lived daily with that hip, those postures, that pain, and the labels assigned to me.

The words and labels that came to define me

I was told I was torn, weak, damaged, unstable, crooked, asymmetrical, out of alignment, counter-rotated, degenerating. I was diagnosed with femoracetabular impingement and a labral tear before surgery, after surgery with post-surgical persistent pain, SI joint dysfunction, discogenic bulging with radiculopathy, annular tears.

I failed conservative care. I failed physical therapy, injections, chiropractic. Then I failed surgery, and PT again. I was the failure, the treatments never failed me.

All the while my workers compensation paperwork was full of NOs. No lifting, no squatting, no crawling, no awkward positions, no sitting for longer than 15 minutes (including driving), no climbing, no running…NO NO NO NO NO.

You can’t do these things. You won’t do these things. If you do, your claim will be in jeopardy. Your character questioned, your motives suspect. You’re seen as trying to game the system rather than seen as trying to get better, to heal, to live some sort of life worth living. 

The end of a career…

The biggest NO of all…no return to work as long as there is still pain.

No return to work if there was still pain.

This fed into my notions of pain being damage, intolerable, unacceptable. Bad, scary, dangerous. It’s what forced me into medical retirement, at the age of 35, from the career that had defined me. All because it was too painful to sit, because I couldn’t fake that it wasn’t, because I believed I was broken. 

All because I came to believe I was all those things I was told I was. That I was weak, unstable, out of alignment, torn, damaged, degenerating, dysfunctional, crooked, twisted. That I couldn’t run, squat, lift, climb, sit. 

My firefighting days - wildland fire

There was a time I believed quite the opposite – this is me on the Inyo Complex Fire in 2007. After an 8 hour drive to the fire we worked the fireline for 12 hours. Lots of sitting during the drive, lots of climbing, running, squatting, lifting, pulling, hiking, and awkward positions fighting the fire all night!

A life sentence…

All these labels and NOs and failed treatments added up to whole person impairment and a disability rating. I was declared permanent and stationary, which in medico-legal terms meant I had plateaued. There was nothing more to be done. I was NEVER going to get better.

At the lowest point of my life, the most painful and hopeless, the darkest and most despairing, I was declared by the experts to be permanent and stationary. 

Stuck there. Forever. 

Is it a wonder we became fearful? Avoidant? Worried? Anxious? Depressed? Frustrated? Sad? Angry? Hopeless? Despondent? Withdrawn?

Is it a wonder we might become that ‘difficult patient’ when our hope has been taken from us and the blame for our pain is set squarely on our shoulders?

Language used in the clinic matters, too

During my talk at Paincloud I shared a story of one of my lowest points in seeking care. I was going to about my fifth physical therapy clinic in three years. My third since my surgery.

I was still hopeful, despite not having much success in PT and manual therapy, and even having some downright scary interactions. Like when one very nice PT showed my husband how to do a manual thrust move to put my SI joint ‘back in’. We did it once and it was painful and terrifying for both of us and we never did it again.

I was still hopeful, despite being told my spine was twisted on it’s axis (?!), that I had an extra lumbar vertebra (I don’t), that my shoulders were rotated and my pelvis counter-rotated (still are, yet have no pain now) and that was why I was in pain.

Or was it the tibial torsion from a broken leg in high school, 20 years before?

I also had too much anterior tilt…and too much posterior tilt. It all got confusing after a while, with no one really agreeing. Obviously, none of that was ‘the answer’ as I was still searching for the next ’cause’ and promised ‘fix’.

This next clinician would be the answer, I was sure.

After years of failure, years of NOs, years of diminishing hope, I was still hanging on. Still trying, still seeking answers. .

It took me 20 minutes just to get out of bed, doing gentle stretches before the stiffness and pain would let up enough for me to sit up and get my feet on the floor. Then to the living room to begin my daily routine of some static and dynamic stretches that lasted about an hour, just so I could face the day.

Afterward I stood at the kitchen counter to drink coffee and eat breakfast. Sitting was unbearable so I stood all day, even on my commute to work – I took the train, which took longer but at least I could stand.

I had to drive to my appointment, though. Driving was my nemesis, my most painful activity. It brought involuntary tears to my eyes every time. It was why I rarely left my house.

But I drove this day. I pulled into the parking lot, gathered myself, made sure my eyes were dry and clear, went in through the clinic doors…2 o'clock hip - language matters

Created for me for Paincloud by Soula Mantalvanos

Dehumanized

After I signed in and was standing at the counter to fill out paperwork, the woman at the front desk told the therapist standing through the clinic door ‘your 2 o’clock hip is here’.

That’s what I was. A 2 o’clock hip. Not a human being. Not a person who had been struggling with pain for three years. Not a person who had lost their career as a firefighter, and with it lost my identity, sense of self-worth, future.

Not a person. Just a painful hip.

I no longer ran, no longer lifted, no longer fought fires and saved lives. No longer camped, hiked, or traveled to see family. No longer went out for drinks with friends or dinner with my husband, no longer watched movies at home, sitting on my couch, because the pain was intolerable. No longer drove, no longer played.

No longer me.

I’m sure the woman was a nice person with no malicious intent. But that doesn’t change the effect of those words, or that they happen often in healthcare. That is how we are often referred to. We’re a painful back, a painful hip, a painful knee, a painful whatever. We are a diagnosis. A condition. A disease. A patient. An appointment time.

Too often, we are not seen as people first. Not seen as people who are living with pain and seeking care because we are unable to cope on our own.

Compliance, motivation, adherence…

This is why it infuriates me when I hear clinicians say their patients just aren’t motivated. That’s bullshit. If we are still alive, we are motivated by something.

I just happened to be motivated by exercise because it was a part of my makeup before pain. So I did all my homework. Despite all my ‘compliance’ and ‘motivation’, though, I was still in debilitating pain. Pain I could not make sense of. Pain that forced to medically retire. Pain that meant I couldn’t sit or engage with my life or be me.

That was looked over all too often. My pain didn’t matter. How it affected my life didn’t matter. My range of motion and adherence to home exercises was what mattered.

And that makes no sense.

Our words matter

the best job ever!

My former self

2 o’clock hip. Weak, unstable, dysfunctional. Torn, damaged. Failure. The implied frailness and breakability.

All of these words, all of the nos, all of the labels – the boxes I was put in – became a part of what I believed about myself, what I believed I was capable of, what I believed I could and couldn’t do.

I became those labels, those words, those NOs. I became small and weak and frail as I withdrew inward, into the shell of my former self. 

Challenging preconceptions

I was not some impressionable sensitive snowflake. I was strong, capable, fit. I was one of 25 female firefighters in a department of 1000 firefighters and I could hang with the boys. I was well-respected in a job that’s hard to gain respect in. 

I could handle stress and pain and difficulty. I grew up in a family where you walk pain off unless there’s bone showing.

I was a problem solver, I helped people get through their worst days. Until every day became my worst day.

I swear. A lot. Still. So I’m not saying mind your language because it might be offensive or not politically correct. I was a firefighter who grew up in the Detroit area where there’s no such thing as swear words, they’re just part of our vernacular.

What I am saying is that the way we make sense of the world, of our experiences, of ourselves, is through language. The way we make meaning of our existence and share that existence with others is through words.

So language matters. A lot. 

Truth

Sticks and stones may break my bones,
but words can also hurt me.
Stones and sticks break only skin,
while words are ghosts that haunt me.
Slant and curved the word-swords fall
to pierce and stick inside me.
Bats and bricks may ache through bones
but words can mortify me.
Pain from words has left its scar
on mind and heart that’s tender.
Cuts and bruises now have healed;
it’s words that I remember.

~Barrie Wade

My plea

Hold compassion in your hearts. The more difficult a patient may be, the more compassion they likely need.  

Listen. Hear us. Know us.

Build us up. Tell us we are strong, adaptable, capable, resilient. Show us we are those things.

Recognize our persistence, patience, and courage.

Help us make sense of things, using our story to guide you. We’ve heard a lot of nonsense over the years, we’ve heard a lot of inaccurate and harmful things, so be patient as we try to come to new understandings.

Guide us back to our meaningful lives. We need your help to get there.

Plant seeds and help us nourish them. This stuff takes time, but there is realistic hope for all of us.

Thanks

Thank you for reading. Thank you for the good work you do. Thank you for listening. It is together that we can make meaningful change.

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16 Responses to "It’s words that I remember ~ language matters"

  1. My older colleague once had a Compensation case manager tell her she could only treat her patient’s chin. Her reply has stuck with me many years, “I don’t treat chins, I treat people.”

  2. Brilliant, your best yet and it is almost like reading my own story. How can it be so difficult for a health care provider like a PT to listen to a narrative like this (common amongst emergency workers, military, nurses) and see that we have pretty much lived in sympathetic mode for a few years and this has inadvertently shaped our nervous system to be hyper sensitive…..and therefore we end up with things like persistent pain. But, as you and I know we get bounced from one to the other and become a ‘problem patient ‘

    • Thank you so much, Adrian! That means a lot to me. I’m so looking g forward to meeting you in Manchester and hope we’ll have plenty of time to chat.

      Your insights into how military, firefighters, cops, emergency workers, etc are in a constant sympathetic state mirror some of my own reflections. At Paincloud in April I spoke of how as a firefighter were trained to always be on the lookout for threats, you’re trained to always be situationally aware vigilant, and that ramps up our systems. So when something comes along, like an injury or a particularly traumatic event or accumulated trauma, many of us will respond to that from an already heightened state.

      I work with a lot of combat veterans through the National Sports Center for the Disabled. Many of them can’t turn that hypervigilance down, they are constantly in a state of threat and preparation. People who’ve experienced childhood trauma are similar. It’s just hard to feel safe when you weren’t safe for so long.

      But that is so misunderstood and the care is so poor when it comes to addressing those unique factors.

      Would love to chat about this more in person!

      One other note. Our nonprofit, the Endless Possibilities Initiative, is doing our first Retreat for First Responders in October this year. We are hoping to address some of these issues! It’s for police, fire, military, and EMS folks and we’re doing it in conjunction with Responder Strong and Building Warriors, two organizations here in Colorado doing good things for our sisters and brothers. Both directors are former firefighters, too.

      • Interesting isn’t it that it never even crossed my mind that living in ‘combat mode’ for 35+ years might relate in a way to persistent pain. I was an Assistant Chief Fire Officer, so day to day responsibilities for 40 fire stations. Why didn’t I put 2 and 2 together that as the allostatic load increased my stress, anxiety then pain increased and before I knew it I’m having spinal surgery and having persistent pain.

  3. I could have written every single word of this! Change out firefighter for athlete.

    The words chipped away at my sense of self. I didn’t want to stop swimming. I was told no. I had SI joint dysfunction. My pelvis was hypermobile and unstable after i “snapped” the ligaments and “tore” them. My pelvis would Never be the same. I would have to be careful, forever. I shouldn’t have children because my pelvis might not be able to handle it. I was 18!!!!!!!! I was 18 fucking years old!!!!!!!!! Why in the WORLD would this be what I was told?!?!?

    No one ever tried to get me back in the water. No one TRIED to return me to sport.

    Why would I NOT see myself as fragile?!?

    I was the best PT patient ever. I did everything I was told, as I was told to do it. Core work- BOOM! Planks for days. Bridges- hurt like hell but how many do you want?

    Ballet- yup I went back twice as an adult. Hurt like hell but I tried, wanted to “stay strong”.

    I’ve talked about the guilt and the shame I felt over on my blog- for not being the woman I thought I should.

    I tried. So hard. So desperately. I did it all like I was asked. And since healing didn’t occur and strengthened the belief that that pelvis of mine MUST Abe so unstable surgery would be the only answer to fix me- but even then it didn’t fix the ligament issue, it merely stopped the bone from moving.

    Oh the war in my head over these ideas and this surgery! I was exhausted and just wrung out. I had to make a choice and the cognitive disodence was at an all time high. I HAD to do something, even though it didn’t completely make sense.

    I turned my brain off and let the “specialist PT and surgeon” drive.

    19 years…… it was a LONG LONG road.

    My real recovery started 2 years post op when I was still having pain and had some room to think.

    Things didn’t make sense…… there had to be other explanations.

    And then I found the science of pain.

    Keep Sharing Joletta. I’m RIGHT there with you. As I know lots of others are.
    😘Amy

    • Wow, Amy. Thank you so much for your kind words and support, and for sharing some of your story, too. When I first started blogging about my pain experiences I truly thought no one would be able to relate. Came to find out that my story, our stories, are all too common. It’s astonishing really, and even more astonishing that it’s only know coming to light. I am grateful that there are those who are listening, though! That those of us who’ve lived with pain, and gone through the trials and tribulations of seeking care, are finding our voices and being heard. It’s the only way things will improve.

      Your story is a powerful one, and I’m so grateful you are sharing it, empowering others to do the same through your courage. I relate so much to trying so hard, so desperately, and doing all that was asked of me. I was a model patient. And it did me no good. It was only in leaving healthcare and stopping all active treatments within the biomedical model that I ended up getting better!

      There are so many people I know, other women like us who’ve gone through years of pain and being model patients, who found pain science and it changed their lives. That’s why I’m so vocal about it now! And why I truly don’t understand the anti-pain science people.

      Anyway – I could go on forever! Thank you thank you thank you for leaving this message and sharing of yourself and your story. It is appreciated beyond measure.

  4. Dear Jo, Amy and Adrian,
    I’m so sorry for your suffering. Its horrendous that the health profession and physio’s like myself are doing this to people every day. We are still being taught in such a blinkered way and its you guys who pay the cost. It shouldnt be this way but you guys really need to be making as much noise as you can. You push me to ask what I can do beyond being a better physio and human being with my patients – like what can I do to change the system of physio education and the physio’s around me who have only limited understanding of pain and the reality of what you speak.
    Thank you for putting it out there. Adrian – nice convo with Jack, restoring venus- nice Amy, a new site for me. Its so great to have resources for patients from your side its a massive step forward.
    Jo see you in Manchester.
    xx

    • Thank you so much for this lovely message, Lloyd. And thank you for working toward being a better physio, human, advocate for change – it is all appreciated beyond measure. I very much look forward to meeting you in Manchester and having a chat in person!

  5. Thank you Jo for sharing this, leaning into that vulnerability and for the work that you do.

    Much of your experience mirrors my own – how it was my pain being “treated” over 10 years; scrutinised by clinicians and students as an interesting case, rather than being seen as an actual person with values and needs.

    And I heard my share of nonsense – from just get married and have kids and you’ll be fine (my symptoms included pelvic pain, so that was charming advice) to you’ll have pain for the rest of your life, you’ll probably need to give up work or go part-time and take lots of bed rest. I lived the latter for a while before finding a way through myself, connected with what was important to me, retrained as a Cognitive Hypnotherapist so I could help more people effectively and started living my life better.

    And there’s plenty of BS along that spectrum of nonsense that so many of the patients I see have heard over the years.

    My most frequent rants are around words, tone of voice, facial expressions and nocebo. Your post absolutely resonates and needs to be heard!

    • Thank you so much for taking the time to leave such a kind, insightful, and supportive message, Sheren. It is appreciated beyond measure! I am sorry you can relate to the post.Sorry that you, too, have lived with ongoing pain and were ‘treated’ in such ways. And I’m also so grateful that you found your way through. That you found your own path forward and reconnected with the things that matter to you. And how wonderful that you are now serving others and helping them find their own way.

      There is so much BS out there. And so much dehumanization. I do hope that it is changing. Sometimes I really feel like it is! The more our voices are heard, and not just heard but listened to, reflected upon, integrated into research and care, the better things will get in the treatment of pain. I hope.

      Thanks so much for connecting, Sheren. It means a lot to me!

  6. Yes yes yes!! Every word rang true, except I am not athletic but I am tenacious, believing there will always be an answer. I was a children’s entertainer, a powerhouse of energy and enthusiasm, until my car accident, I was 3 years unemployable, nervous breakdown and one scared, angry, hurting mum. That was my breaking point. I couldn’t be a good Mum anymore. I was that “Oww don’t lean against me Mum” that “I need a lie down” Mum, that snappy “Argh why did you do that?!” Mum, and that “No I’m sorry I didn’t manage to make dinner tonight, beans on toast will have to do” Mum.. Plus for my compensation claim I had to write down (journal) every hint of pain and limitation to “prove” to the insurer that I was really ‘damaged’. Talk about negative self-talk! (4 years worth) Over time some therapies helped a little, but rewiring how I thought was the breakthrough, now 12 years later I am the founder of a movement and mindfulness program and teaching others how to use movement to understand their body better and use mindful movement and breath work to settle unruly nervous systems and use relaxation techniques to increase self-awareness of exactly what we are saying to ourselves and re-framing it. I’m glad to hear you are doing so well and look forward to reading more. Many Blessings, Claire Marie B x

    • Thank you so much for your kind words and for sharing your own story, experiences, and insights, Claire Marie B.

      I wrote a post on trying to get better while having to prove we’re in pain. Some of the systems we find ourselves in when in pain sure make it difficult to heal and move forward, don’t they?

      I’m so happy to hear you’ve found your path forward and appreciate so much that you’re now helping others find their own. Keep on keeping on!

  7. Hi Jo,

    I came across you about a month ago though an interview on Facebook that you did with Peter O’Sullivan – and ended up on your blog. Since then, I’ve returned many times and read different posts, but just saying hi for the first time today :)

    I’ve been on a journey with my back since 2015 that has taken me to some dark and low places. I don’t need to go into the details – you’ve been there! I really identify with so much of what you have written – particularly with how strong you felt prior to stepping off the fire truck that day and the shame that followed in not being that same person in the years that followed.

    I came across this video of Peter O’Sullivan’s (https://www.youtube.com/watch?v=dlSQLUE4brQ&t=29s) just over a year ago and it was a game changer for me. It set me on a different path – one that is bringing me to a much better place, physically and mentally.

    Anyway, just wanted to say hi and thanks for this blog – I’ve found it really healing to read.

    Dolores.

    • Thank you for taking the time to send such a thoughtful message, Dolores, it is very much appreciated. I can relate to Peter O’Sullivan’s video being a game changer! He was a game changer for me as well, as you know. Pain is so life-upending, isn’t it? A social worker, who also lives with pain, once said to me that what many clinicians don’t understand is the profundity of the identity loss that comes with pain. It was such a true statement for me. Not feeling like myself, not being able to do the things that made me feel like me, was the most distressing part of my whole experience, I think. And there was so much shame that came along with all that, too.

      Your comment about being in dark and low places resonates so much with me. I think of my worst years of pain as ‘my dark years’. Looking back is like looking into an abyss at times. I’m incredibly grateful to have found a path forward out of that hole. It sounds like you are on your own path forward and that is wonderful to hear. I wish you well along the journey. And you know where to find me if you ever need a listening ear or a reminder that you are not alone.

      Thanks so much for connecting and for your kind words. It means so much to me.

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