I am delighted to be speaking at MedEduCare’s SEMS meeting in London on Friday 7th December. For more details, and to book your place, please click the link below.
Breaking the Silence About a Silent Disease: One Voice of Chronic Pain
by Leda McDaniel
“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”
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?
- 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)
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”
How I Wanted To Be Treated by Strangers and Acquaintances:
- With human decency and kindness, with understanding
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:
You can also find her blogging at:
- 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.
- 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.
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.
Also, 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…
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:
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:
It was such a pleasure teaching in Helsinki.
Huge thanks to United MSK Professionals of Finland for inviting me. Looking forward to returning again!
I am delighted to announce a FREE KnowPain Webinar with Clinical Edge
on Monday 22nd May.
The webinar has 5 learning aims:
- Provide practical ideas to help people make sense of pain.
- Explore an evidence-based understanding of what people in pain want from healthcare professionals.
- Provide an introduction to teaching & facilitation skills in order to optimise learning for people in pain.
- Explore the role of metaphors within pain reconceptualisation.
- Consider the application of pain science education within sport.
To register for this event, simply click the link below:
I recently had the pleasure of teaching a group of healthcare professionals up in Aberdeen. Clem Nihill from Empower Physiotherapy has very kindly written a short, reflective piece outlining 5 things he took from the course.
Here’s the link:
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.
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.
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.
Marie is a French physiotherapist who works in Toulouse.