Breaking the Silence About a Silent Disease: One Voice of Chronic Pain

Breaking the Silence About a Silent Disease: One Voice of Chronic Pain

by Leda McDaniel

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“Hey, I can hear you coming from a mile away!”

I sat down gingerly and tried to avoid eye contact with the speaker of that statement and fake a wan smile, but in all honesty I was fighting back tears. The comment came from a classmate of mine in my first year physical therapy class and it was in reference to my use of crutches (and the noise they made) coming down the hallway on my way to class. I had been on crutches for about 4 months at that point and would use them for a full year due to the chronic pain that I had developed in my left knee after complications from two surgeries (I had been diagnosed with complex regional pain syndrome). Hearing a comment like that was not uncommon for me and during the three-year period that I spent coping with chronic knee pain, I experienced many different reactions to my chronic pain and disability.

In some interactions with others, I found solace and was met with loving presence and compassion. Unfortunately, many of the conversations that I had with healthcare professionals, family and friends, and passing acquaintances were filled with openly hostile, hurtful, and critical remarks about my condition.

I am currently a Doctorate of Physical Therapy student at Ohio University and I have experienced both the patient and the health care provider perspectives of chronic pain. I wish to speak out about the stigma and negative stereotypes that I experienced as a chronic pain sufferer with the aim of sparking dialogue and hopefully provoking positive changes in how we treat those with this disease. Here are some examples of how people reacted to me when I was in chronic pain…

Health Care Professionals

How I Was Treated By Healthcare Professionals:

  • As if I was faking my pain or making it up

(The fancy word in the medical field for this is “malingering”):

Multiple doctors: “Since you are so long out of having surgery, you should be just fine. I suggest that you just start to walk you should be able to run too.”

“If you are still having pain: well there’s really no good explanation for it”

“We can’t find a cause for your pain, you should go see a psychologist”

(The best scientific evidence does NOT support psychological risk factors or psychological causes for Complex Regional Pain Syndrome (what I was diagnosed with)1,2

  • As if I was an annoyance/wasting their time:

From one doctor: “There is nothing wrong with your MRI, the surgery went well, and there is not really anything else we can do for you”

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Multiple physical therapists: “you just have to get your quad stronger, are you doing your exercises? Pain is part of having surgery”

(At this point I was well past “quad inhibition” and post-surgical pain, we’re talking 8-12 months after knee surgery).

I have heard from multiple doctors and physical therapists the “joke” of groaning or being unhappy when they see a chronic pain patient on their schedule. When will we acknowledge that this language and attitude is harmful as it perpetuates negative stigma for these patients?

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https://www.jospt.org/doi/full/10.2519/jospt.2018.0610

  • Like a drug seeker

From one doctor: “We can’t give you this pain medication even though it is helping because it may be addictive.”

(I had stated that I had no desire to take medication- but this was the only thing that dulled my pain at one point. I had no history of substance abuse and did not possess the risk factors for opiate addiction)

How I Wanted To Be Treated By Healthcare Professionals:

  • With objectivity and an unbiased assessment of the signs and symptoms of my condition
  • With evidence-based treatment options
  • With compassion and empathy for the human suffering I was going through
  • With appropriate communication/recommendation to other healthcare professionals as needed

Friends and Family

 How I Was Treated By Friends and Family:

  • With Unconditional Love, Encouragement/Support, Empathy

I was blessed to have a few individuals in my life who went to great lengths to demonstrate their love and concern and were constant sources of support and encouragement. These individuals made the effort to spend time with me despite my limitations and to talk with me about my experience despite any discomfort or unpleasantness it may have caused them. I am incredibly grateful for the thoughtful treatment from these few family members and friends.

  • With Disbelief and/or Denial

“Why can’t you just walk?”

“Why don’t you just do ______ (yoga, Pilates, swimming, stretching)?

(The reality was I could not even move or touch my knee without being in severe nerve pain. There was a huge disconnect between what I was experiencing and others’ misunderstanding or inability to differentiate chronic pain from acute pain they had experienced)

“How can you still be in that much pain?”

“I had pain after my knee surgery too, you know”

How I Wanted To Be Treated by Friends and Family:

  • With unconditional love
  • With encouragement and support
  • With empathy (an attempt to understand my suffering)

 Strangers/Acquaintances:

 How I Was Treated by Strangers and Acquaintances

  • With Ridicule/Derision (veiled “joking”)

“I can hear you coming from a mile away” “Hey want to race?” “When are you going to get off of those things?”

(Reactions to seeing me on crutches and the long time I spent on crutches: 1 year total)

“Why aren’t you better by now?”

“At least you get a good parking space” (reaction to my handicap parking sticker)

  • With Comparison Statements

 “Oh yeah, I was on crutches for a week after I sprained my ankle, it was the worst!”

“I was back to playing basketball within a year after ACL surgery, you just have to get your leg strength back”

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How I Wanted To Be Treated by Strangers and Acquaintances:

  • With human decency and kindness, with understanding

Concluding Thoughts:

Treating chronic pain is no easy feat and I want to acknowledge that. However, the negative interactions that I experienced, I believe, were part of a larger marginalization of those with chronic pain that I wish to bring light.

My intent in sharing these interactions is not to criticize one particular person or group of people. Merely, I would like to encourage reflection on the part of individuals who interact with people in chronic pain. I think that we can do better as healthcare providers, friends, family members, and even as a society in bringing thoughtfulness to our language and actions as we work to support these individuals in their pursuit of health and wellbeing.

Leda is a current Doctorate of Physical Therapy (DPT) candidate at Ohio University and upon graduating in May 2019 is interested in working with patients with various chronic pain conditions.

Leda recently published a book about her experience of personal recovery from chronic pain, which you can find on Amazon:

https://www.amazon.com/dp/069212120X?ref_=pe_870760_150889320

You can also find her blogging at:

https://sapiensmoves.wordpress.com/

References:

  1. Harden RN, Oaklander AL, Burton AW, et al. Complex regional pain syndrome: practical diagnostic and treatment guidelines, 4th edition. Pain Med 2013;14:180–229.
  1. Marinus J, Moseley GL, Birklein F, et al. Clinical features and pathophysiology of complex regional pain syndrome. The Lancet Neurology. 2011;10(7):637–648.

 

W.O.W. CHAT @ the San Diego Pain Summit

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I have just returned home after an incredible time at the San Diego Pain Summit. Thanks to everybody for your kind words following my talk at the Summit & a special thanks to all of you who attended the 2 day workshop. 

IMG_E7307Also, a huge thanks to Rajam Roose for setting up such an impressive and much needed event. For those of you who are yet to attend a San Diego Pain Summit, it’s a must for your CPD calendar and San Diego has to be one of the coolest cities on the planet – what are you waiting for?! 

Finally, thanks to Shelly Prosko for inviting me to chat to her. Here’s our pool side W.O.W Chat…

Know Pain is coming to Ghent, Belgium!

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I am both delighted and honoured to be teaching Know Pain in Ghent on the 19th & 20th of April 2018. For more details about this course, and to book your place, please click on the link below: 

https://smarteducation.be/cursus/know-pain/

Here are a couple of short videos to explain how attending this course

will help you to help your patients:

This course is suitable for all healthcare professionals, and is relevant when helping anybody in pain. This includes elite and amateur athletes:

http://bjsm.bmj.com/content/51/17/1259

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FREE KnowPain Webinar!

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I am delighted to announce a FREE KnowPain Webinar with Clinical Edge

on Monday 22nd May. 

The webinar has 5 learning aims:

  1. Provide practical ideas to help people make sense of pain.
  2. Explore an evidence-based understanding of what people in pain want from healthcare professionals.
  3. Provide an introduction to teaching & facilitation skills in order to optimise learning for people in pain.
  4. Explore the role of metaphors within pain reconceptualisation.
  5. Consider the application of pain science education within sport.

To register for this event, simply click the link below:

https://www.clinicaledge.co/blog/free-webinar-how-to-treat-persistent-pain-and-use-the-latest-pain-education-strategies-in-your-treatment-with-mike-stewart?utm_source=ActiveCampaign&utm_medium=newsletter&utm_campaign=ACKnowPainwebinar1&utm_term=ACKnowPainwebinar1&utm_content=ACKnowPainwebinar1&utm_source=ActiveCampaign&utm_medium=email&utm_content=Free+webinar+-+How+to+treat+persistent+pain&utm_campaign=Know+pain+webinar+email+1+nonmembers

 

Meanings of Pain

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I would like to invite you all to like the @Meaningsofpain Facebook page. The page is linked to the forthcoming book, Meanings of Pain (Springer 2016). The book aims to improve understanding of the link between meaning and pain, and to stimulate further research in this area.
 
The isolating and unpredictable nature of pain frequently leads to a chaotic narrative where people seek meaning. Without this sense of meaning, the experience of pain often remains unexplained and invalidated.
 
I am delighted to have been asked to write a book chapter entitled, Seeking Order Amidst the Chaos: The Role of Metaphor Within Pain Reconceptualisation for the forthcoming book, Meanings of Pain.
 
As with the entire book, I hope that this chapter takes you on a journey of discovery. A journey from chaos to order. A journey unlike any other where we’ll attempt to unravel the complexities of communicating and understanding pain & distress.
 
As you’ll discover, it can be an extremely hopeful & optimistic journey. Yet, at the same time, it can also be a terrifying & pessimistic voyage. Metaphors can help or hinder people’s understanding of pain. This chapter will aim to develop your understanding of this dilemma, whilst also highlighting examples from within practice to guide you.
 
Ok. We’re not really going on a journey, nor are we going to unravel anything. Actually, come to think of it, nor are we going to stand underneath anything. Words such as ‘understand’ act as a reminder that metaphors live a concealed existence all around us. They are an essential part of human communication and can be crucial to how we communicate, learn, discover and create meaning.
 
Metaphors are used when conveying experiences most resistant to expression. Pain is one such experience!  

Today, I am angry: A guest blog by Marie Bourgeois

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A guest blog by Marie Bourgeois.

Today, I am angry.

As medical practitioners, we are often not equipped to deal with human complexity. We were taught to deal with pathology. We were told we would have to explain to our patients what they have to expect for their future. We were told that we might not be able to fix some people and that they will probably need surgery. But we were not prepared for the enormous teaching role that our work involves.

Six months ago, I saw a teenager. 17 years old, a student beautician, wanting to have a long and beautiful life with a future husband and children.

First time I saw her, she was paralyzed by fear. She couldn’t move really more than 10° in each lumbar plan, she was dealing with an awful pain… And she didn’t want to be here. She cried during all the session… and yet, I didn’t even ask her to move more than what she did to come to the clinic.

She was crying because of fear and anxiety. She was crying because she already had a physical treatment and – as can happen – it hurt her, without any benefit.
She was crying because she had been told that, as her dad had to go (twice!) to surgery because of a herniated disc, it would be probably the same to her – sooner or later. She was crying because she had been told that a job as a beautician, with low back pain, is not a job for her.
She was crying because she had been told pregnancy would be difficult to her because of her lumbar spine. She was crying because she had been told the day she would give birth she will not have epidural anaesthetic because of her lumbar spine.

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17 years old, and she was paralyzed by fear. 17 years old and she couldn’t picture any future she wanted without pain and suffering in either her private or professional life.

I was angry. I was sad. I felt ashamed because the practitioners she was examined by were probably thinking they were doing the right thing. As I have done to other people: I have told other patients, for their own good, they had to change the way they live.

« For their own good »…

We are all guilty of overly paternalistic care and one-way advice giving at some point. We are not prepared to deal with humans. Only with pathology… And sometimes, when we don’t know, it is easier to say that this activity is bad to the patient than saying “I doubt I am the best to help you to do this again.”

I changed. I am far away from perfect, and I have a lot of things to improve. But changing helped me to deal with this young girl. To help her to feel better. This helped me to not focus on the pathology but on the human I had in front of me.

She worked hard, and she is smart. She understood a lot of things. She felt better, she smiled again, and she finally was feeling better than before her pain crisis. Everything was fine…

… Until she experienced pain again.

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I had a session with her yesterday. She spent the entire session crying again. She had pain in her leg, “Like my dad”. She had paraesthesia, “Like my dad”. Sometimes, her legs barely supported her, “Like my dad”.

I am angry because of the communication problem there was with this young girl. I am angry with myself because I seriously thought she had overcome her fear. I am angry at the system because we are not prepared to deal with the complexity of human emotions, to deal with the brain. I am angry because she knows it’s going to be better. She knows it’s hard, and yet her pain is going to improve again. And she is still as scared as the first time I saw her. She is still thinking her life is ruined. And yet, nothing is damaged inside her back. But she is now paralyzed by fear every time she feels pain.

I am angry. We, as medical practitioners, are inducing and conditioning fear in others. Even though our bodies are equipped with some amazing abilities to self-repair. We, as medical practitioners, are inducing ongoing pain… by doing what we think is the best for our patients. I am angry. We never learned how to deal with human conditions, how to explain complex problems to somebody, to explore feelings, to overcome fears, to promote happiness. As a student, all I was taught was how to deal with the pathology, and to ensure that, “You don’t involve yourself too much, you have to put a therapeutic distance between your patient and you.”

I am angry. And I will try not to forget this young girl next time I have to explain something. Words are like toothpaste. Once they’re out the tube, you can’t put them back in!

Thank you for reading.

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Marie is a French physiotherapist who works in Toulouse.

The Voldemort Effect: A Guest Blog by Jack Chew

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It’s not news to anyone aware of my podcast, previous blogs or twitter feeds that I’m quite the fan of ‘stirring the pot’, and that my contrarian tendencies often walk me into glorious and inglorious disputes and debates. Some bear fruit and progress ensues, others quickly descend into snide remarks and a dozen emojis… But recently, I’ve clashed with colleagues who are my usual allies over one particular topic; one that I refer to as ‘the liberal use of language’. 

To clarify from the off, I loathe the suggestion that ‘the pendulum has swung too far’ when it comes to professional and societal understandings of pain, function and more broadly, human health. BUT, I am certainly concerned about the tactics being used by some ‘thought leaders’ and their followers as they try to move beyond the ‘hurt equals harm’, tissue-centricity that remains commonplace. This concern is related to their apparent willingness to implement whatever strategies they like to achieve this goal; at times this includes the overlooking of both logic and evidence. 

To simplify a little, I’ll focus specifically on what I see as a self-induced phobia of talking about human anatomy. An example to set the scene: 

A 30 year old laborer was assessed by a therapist following an injury at work. He was in a tight corner lifting breeze-blocks that would normally require assistance but instead, he tried to wiggle it out of the space alone. He did so with a flexed and rotated spine then felt sudden back and leg pain which he had not experienced before. A few weeks have passed with little resolution, he is now off work and, as is the nature of modern society, every friend, family member and shopkeeper’s dog have given their take on diagnosis and proposed solution. Fortunately (ish) he has seen his GP who has prescribed some medication and advised him to avoid bed-rest. His social consensus diagnosis of ‘slipped-disc-trapped-nerve’ is neither supported nor refuted by his doctor but fortunately (ish) he was encouraged to see a local Physiotherapist. 

4 weeks later, subjective assessment by said Physio reveals significant concerns regarding work, sport, general ADL function and what the future might hold for him. All of which are completely legitimate and sensible concerns when efforts are made to view the problem through the patient’s eyes, especially in light of his current education regarding pain, injury and bioplasticity. Objective assessment reveals certain directional and positional preferences, tenderness in the lower lumbar spine and buttock, a positive straight leg raise but fortunately, no sign of significant neurological compromise such as myotomal weakness, reflex changes or overt sensation loss. 

Now it is far beyond the scope of this blog and far beyond the reach of my current patience to discuss exactly how this patient should be treated and managed. Instead I will draw a line in the sand here and say that in my opinion, any failure to explain the likelihood of this man having had a disc injury that is affecting a nerve root is nothing short of dishonest. 

How we go about doing this is where the conversation gets interesting of course, but any purposeful avoidance of the words that the patient brought to the conversation, is linguistic gymnastics that are very likely to make you (as well as the team, company and profession that you represent) look like idiots. 

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We now treat discussions with patients regarding anatomy, tissue physiology and structural injury with kid gloves. While our good intentions make us sensitive to the contemporary understanding of pain, and keep us from labeling disruption of structure as the only causal factor in pain experience, I argue that we are beginning to do society and our profession a gross disservice. 

And so to my naming of this blog and the suggestion that many in the MSK industry are succumbing to what I call ‘The Voldermort Effect’. 

Odd as the comparison may sound at first, failure to discuss structural injury, at least initially, in the terms that the individual has come to understand it, is doing the same disservice that members of the magic community did by refusing to mention Voldemort’s name in JK Rowling’s Harry Potter books. By refusing to label him, they prevent an open and honest discussion from taking place about possible solutions. And that is where mainstream Physio reformers find themselves today with regards to morphological and patho-physiological lexicon. The idea that we must avoid words that are well established in society due to fear of mortally wounding patients is rank hypocrisy that patients are very likely to see through. 

How does this sound?: 

“Your body is strong and robust with a wonderful capacity to adapt to the stresses and strains placed upon it. It will adapt regardless of your age and given the right stimuli, it is amazing what biomechanical and morphological quirks it can accommodate. 

But your mind will latch irrationally onto words, regardless of the context in which they are discussed. Because unlike your body, your mind is invariably fragile and so we mustn’t take any chances.” 

This ‘new-age dualism’ is bound to push patients back towards the pseudo-truth-tellers who, through ignorance and/or laziness and/or profiteering, will continue to attribute cause of pain to specific tissues. 

‘He who shall not be named’ came back with a vengeance and the denial of his existence facilitated his reincarnation. Similarly, the failure to discuss anatomical structures in a patient’s own familiar terms is bound to give fuel to our nemeses and thwart the progress that we all dream of. 

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I must point out that I have landed on this analogy through my interest in Liberal Democrat MP candidate; Maajid Nawaz who makes the same comparison to President Obama’s inability to name recent acts of global terrorism as ‘Islamic Extremist Terrorism’. I welcome you to draw the parallels between our causes, as always, I have my take, but most importantly it would be unfair of me to not mention his influence on my use of the term. So if you’re interested, this short clip explains his own use of the analogy very well: https://www.youtube.com/watch?v=6BQWqFyRpFQ 

And yes, I’m suggesting we should talk about structures regardless of presentation and duration of symptoms if that’s what the patient wants to talk about. Because patients kind of matter in the whole ‘getting better’ process, right? The merry dance that some clinicians have found themselves doing to avoid certain words is very impressive, but the notion that a therapist would be admired for opening their explanation of assessment findings with ‘well, pain is emergent and we’ve come to understand that every person is influenced by biological, psychological and social factors’ makes me shudder and genuinely fear for the future sanity of my soon to be burnt-out colleagues. 

I’ve long banged the ‘mind your language’ drum across all media, but I would suggest that I’ve been misunderstood if it has been thought that my mission is police language in an oppressive manner. 

Mainly because words are just words. 

Many are aware of the brilliant research of Ben Darlow and others regarding the impact that language can have on patients; and I am not for a second countering this work, since I have long promoted it. However I feel that a simple but intellectually dishonest interpretation of such work has infected the minds of many well-meaning reformers who seem to attribute power to words that they simply don’t have. 

Words are just a series of letters. Letters are just a series of lines. It is our history, culture, language, consciousness, emotional maturity and many more factors that have led to some words having more meaning and connotations attributed to them than others. Forgive my over-simplification here but it is through this complex sociological process, coupled with complex individual biological and even metaphysical processes that some words can sometimes influence beliefs. 

(This is what makes language so incredibly interesting, but I won’t assume that anyone is nearly as geeky as I am about the topic, so I’ll skip a chapter on linguistic theories… this time.) 

But I can’t help but prioritise a plea for recognition of the widely respected concept that it is when words influence beliefs and when beliefs influence behavior that we should be most interested. Because these processes of influence can be demonstrably affected by our interactions, and therefore the impact that we have on any individual’s life. 

I agree that clumsy use of jargon and structural reasoning has clearly demonstrated that we can have deleterious effects on these processes, but the answer is surely not to kick back so hard against it, as to stop using words altogether?! 

How about we instead aim for honesty? Human pursuit of truth is an incredible thing so why not aim for delivery of our very best guess at that moment in time? 

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This approach means that using the term ‘crumbling’ to describe a spine remains off the table, because it’s dishonest. But using the terms ‘bulge’ or ‘fracture’ surely can’t have such deep-rooted negative connotations that they mustn’t be uttered in case they do irreparable damage, even when they are immediately placed in context? 

Failure to talk about Voldermort did nothing to contribute to his existence and if anything, it fuelled the fear and mystery surrounding his power. We are seeing language being policed in all walks of life contributed to by ‘social justice’ movements and a new wave of Marxists suggesting oppression where it doesn’t exist. So instead of inventing our own brand of ‘political correctness’, could we instead reclaim the words, reframe them, attach reassurance to them, add humour to them, laugh at our historic mistakes and drive a process in which we are honest with our fellow human beings about what we think is going on at any given time? 

In a recent in-service training session with the brilliant IPOPS band 6 team, we discussed the concept of individuals and groups being happy to promote or condone dishonesty if they perceive it to be in the ‘right direction’. This is a dirty tactic that we surely can’t succumb to at an N=1 level in clinic. 

We all have our favorite topics attached to our specific agendas, especially on social media. The ease of the retweet to support our general narrative is something than no-one is immune from. But at a clinical level at least, a push for balanced honesty is surely the only way to stop the swinging pendulum of patient education becoming a wrecking ball. 

In a nutshell: think hard, be critical, be reflective and then say what you want!* 

*Including about this piece! 

Chewy

A Practical Guide to Persistent Pain Therapy

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