This guest post is written by Leda McDaniel, who wrote a fantastic article for SethOberst.com back in 2014 entitled An Athlete's Open Letter on Pain and Recovery. So I was thrilled to have her approach me to write a follow-up in which she outlines two steps we can take to make difference in the epidemic of chronic pain. Many thanks to Leda for writing this and it's certainly a good one to share with clients or family members.
"I will do anything to get out of pain"
This was the thought running through my head during the worst three months of my bout with chronic pain. I felt like I had tried everything. I had seen doctors, physical therapists, and psychologists; had tried drugs, surgery, acupuncture…yet, I was still in pain. Through my experience with chronic pain following knee surgery, I have spent many hours reading and thinking about how to get out of pain. How many people are having this same thought right now? By one estimate, nearly 100 million Americans suffer from chronic pain1 and chronic pain is the most common cause of long-term disability in the United States2.
How do we help people get out of this pain state and back into a meaningful life? Is there a “cure” for chronic pain in our society? Pain is a complex phenomenon and there are no easy solutions at this point. However, I think there are two things that we can do that will make a difference.
#1 Change Our Language
"You don’t get it, something is wrong"
This was how I felt when trying to explain to people what my pain felt like after having dealt with it for month after month. Pain works as a way to communicate danger signals about internal and external stimuli.3 But, it’s not as simple as saying stimulus X will cause Y pain response. Acute pain is a normal response by the body to injury or danger, but in chronic pain these danger signals can become magnified or certain body areas can produce signals of threat without any danger being present.3, 4
Our healthcare professionals must keep up to date on current pain theories and be able to communicate this information clearly to patients. It is no longer acceptable to fall back on the anachronistic belief that pain equates to tissue damage in all cases. This is simply not true. A more progressive understanding of chronic pain must include discussions of central nervous system sensitization and other neural changes and we must use this knowledge to guide treatment. Chronic pain patients need guidance from these professionals in order to help them make sense of their symptoms and take a more proactive role in their own treatment.
"You’re just going to have to learn to live with it"
Words are impactful to all of us, but increasingly so to those in chronic pain states. Furthermore, communication coming from a medical professional may carry additional weight and influence. Thus, it is very important when talking to those in pain to communicate in a thoughtful manner and choose your words carefully. One clinician won’t let his trainees use any of these phrases with chronic pain patients: “That’s the worst I’ve ever seen.” “It looks like bone-on-bone.” “Your disc is collapsed/busted/blown out/ruined.” “You will end up in a wheelchair.” “Just learn to live with it.”5
Whether because of a distrust of patients or because of an inability to address pain effectively, clinicians often dismiss chronic pain patients. This can be increasingly frustrating to patients, who feel “misdiagnosed, misunderstood, and miserable.”6 Trust your patients. When they say it hurts, it is best to assume they are telling you the truth. The fancy word in medicine for faking is “malingering.” Even though people may think that they are great at telling fake pain from real pain, they are not very good at all (in one study, clinicians were only 51% accurate in distinguishing fake pain from real pain).7 Your best bet as a listener is that the person’s pain is real until proven otherwise.
One of the hardest struggles about living with pain is the mental toll that it takes trying to maintain positivity and hope each day. Those in chronic pain need support from family, friends, and healthcare professionals to maintain an optimistic, albeit realistic outlook (see how this idea affected me personally: your pain is NOT your fault).
One way to practice optimism (and it is a practice!) is by returning to those things that you are able to do and that you are grateful for in your life. I like the words of Dr. Jon Kabat-Zinn, who says, “…as long as you are breathing, there is more right with you than wrong, no matter what is wrong.”8
There are many things that factor in to recovering from chronic pain, but as Moseley et al., say it is usually a long road to recovery and it takes some dogged persistence and hard work.4 Sufferers of chronic pain need your support! Sometimes all it takes is one person that believes in your ability to get better. You can be that person for someone in pain.
#2 Treatments Need to be Integrative and Collaborative
What does successful chronic pain treatment look like? Well, if a picture is worth a thousand words, this 2 minute video is worth…let’s say it’s definitely worth a watch:
Given that successful treatment for chronic pain is so individualized, one of the key ingredients is to get pain sufferers involved in their own treatment. Also, because pain is a phenomenon that is influenced by physical, mental, and emotional factors9, finding treatments for chronic pain that address these factors in an integrative way is crucial for healthcare improvement. We need to embrace treatments for chronic pain that address each of these contributing factors.
Drug treatments may be helpful for some chronic pain sufferers, but others may benefit more from non-pharmacologic treatments like physical therapy.10 It is important to realize that your mental and emotional state can severely impact pain and your experience of pain (i.e., suffering, which has been called the “second arrow”). For example, one study found that catastrophizing thoughts were the most associated with increased pain.11 So, it is no surprise that there is a high incidence of comorbidity between chronic pain and mental illness. Some research suggests that anxiety and chronic pain may “facilitate” each other12 and some experience depression, which can in turn increase pain.6
As I’ve experienced personally, dealing with a chronic pain condition “successfully” forces you to come up with adaptive coping strategies so as not to compound the problems that you are already facing. Writing can be a helpful strategy to reduce stress and process traumatic events.13 Also, meditation/stress reduction techniques can be effective for chronic pain. One of the most widely researched and applied programs is Dr. Kabat-Zinn’s brainchild: Mindfulness Based Stress Reduction course (MBSR) [From Seth: Check out Kabat-Zinn's book Full Catastrophe Living on my Recommended Reading List]. In one of the worst periods of my pain, I started a formal meditation practice with the help of this free online MBSR course. It completely changed the way I related to my pain and significantly increased my ability to cope with it and make proactive decisions. [From Seth: as we learn more about the neuroscience behind persistent pain, interventions like meditation and expressive writing are more than just coping strategies, they are treating the pain.]
As of yet, I don’t see a “cure” for chronic pain on the horizon. Treatments for chronic pain must be appropriate for each individual, which is part of what makes disseminating chronic pain treatments on a large scale such a challenge. However, for those in pain and those trying to help chronic pain patients, there are proactive steps to be taken. If we all make an effort to change our language when discussing chronic pain and embrace collaborative treatments we can make a difference in the lives of those with chronic pain.
About the author:
Leda is in her first year of physical therapy school at Ohio University. She was inspired to go back to school for physical therapy because of her personal experiences with a knee injury and subsequent surgeries, which have left her dealing with chronic knee pain for the past three years. Currently, she is writing an e-book about her experience with chronic pain, as well as blogging at: https://farmerleda.wordpress.com/. Feel free to get in touch with comments or questions: firstname.lastname@example.org