This page aims to provide a reflective space for people who live with pain and healthcare professionals. All experiences discussed throughout the case studies shall remain anonymous unless otherwise stated.
If you would like to add your own accounts of either living with pain or working to help others make sense of painful experiences
please contact me at firstname.lastname@example.org
Case Study 1
Case Study 2
by Dr Marianne Dorn
Case Study 3
A Physiotherapist’s account of caring for 4 people with pain
by Robin Higginson
Case Study 4
How the words we use can limit our ability to heal
by Joletta Belton
Case Study 5
Pain has to live with me, I haven’t got to live with it!
by Ann Parkinson
I have a professional and personal understanding of persistent pain. Personal experience of persistent pain is one of the reasons I am so passionate about helping those with persistent pain find themselves again, enjoy life and do what they want to be able to do.
This post is dedicated to pacing and managing pain. To help explain this I am going to use the spoon theory by Christine Miserandino and the blog by two Occupational Therapists about this. Please read the blog before reading the rest of this post. This is the great blog by @LifeReclaiming http://reclaiminglifefrompain.blogspot.ca
So many patients come to me and say they have lost who they are, have lost hope, and have stopped doing many of the things they used to enjoy. I am grateful to be able to give that hope back, help them find new things that are enjoyable and return to the things they used to love (if they choose to), and help them find who they are again.
There are many things that are important in persistent pain, some of the main keys to unlocking life again are understanding pain, hope, pacing, exercise, relaxation, social support and fun.
When pain persists the nervous system (brain and spinal cord) and the body become sensitive and react to things they wouldn’t normally. If we ignore pain and push on through it our brain thinks it needs to shout louder to get us to stop and the pain becomes worse and takes longer to settle down. People sometimes avoid doing a particular task or going out because of fear of pain. When we avoid doing something this increases the sensitivity. So what do we do?
We need to know what helps us emotionally, physically & mentally, and what doesn’t. Some things are a trade off, for example it may be going out to an event with friends is really helpful emotionally and mentally but physically it causes fatigue and an increase in pain. If the benefits outweigh the costs of going and you know it will cause an increase in physical symptoms, planning and consideration of what is helpful for before and after the event is needed. Consider the spoon theory, how many spoons is it likely to take away? Do some spoons need borrowing from the day/few days before and how can they be replenished afterwards?
It is important to desensitise the nervous system and body. If we are in trade off all the time we are winding things up and calming back down to a similar level. It is important to use things like relaxation, breath and body awareness, and gentle exercise to help calm things down and re-educate mind and body.
One patient once said to me ‘I have decided pain has to live with me I haven’t got to live with it.’ This was a turnaround point from the pain being a focus to life being a focus and pain tagging along in the background. Pacing, fun, exercise, relaxation, socialising, and hope, all help keep pain in the background. Sometimes pain goes away eventually, others it keeps fading with occasional brightening to varying degrees before it fades again. It is important to remember pain can change, we are the ones in the driving seat and can make conscious choices which help pain to fade.
On a personal note I do not hate the pain I have had or have, I do not resent it or wish I had never had it. I am grateful: for all it has taught me; all the things I would never have seen without it especially as at one point in time I had to take some time out and slow right down, in fact it was so slow I had nearly stopped, this was because I had sensitised my nervous system really well by carrying on through the pain using will power and determination (not recommended and I knew better really, there is a story there); and I have also been able to help many people with persistent pain learn how to help themselves.
I would like to leave you with an analogy I use often with my patients and used with myself when I needed it. Think of the hare and the tortoise, who won the race and which one benefited the most? When we slow down, take rests when needed, and keep moving steadily, we can see all life has to offer, we can observe all the colours and feel the earth beneath our feet, have fun, and choices are usually easier. It’s ok to be the hare when needed and then use the tortoise ways again. Notice when you learn most and which is more enjoyable.
Case Study 6
Today, I am angry
by Marie Bourgeois
Case Study 7
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.
Case Study 8
Donner du sens à la douleur à Paris
Making Sense of Pain in Paris
Whilst teaching in Paris recently, I had the great pleasure of meeting a lady who has very kindly agreed to share her story about living with back pain alongside a transcript form our meeting below (in French)…
Case Study 9
Donner du sens à la doulour à Grenoble
Making Sense of Pain in Grenoble
Following my recent evening conference in Grenoble, which aimed to help people express their experience of pain, I received an email from a gentleman who had attended the talk,
and wished to share his story to help others…