CRPS Awareness Day 25: When They Laugh
By Guest Blogger Sarah Bigham
This blog was originally featured on The Idea Crucible (click here) and featured this thank you: “Thanks to Lori Leitzel Rice for inviting me to contribute my patient-focused perspective on practitioner communication. Lori is my CranioSacral massage therapist, and a dear friend who has seen me through the worst times of my life. I am forever grateful for CranioSacral techniques as well as Lori’s wonderful, listening hands.”
My name is Sarah and I am a chronic pain warrior. I wish a support group existed for people like me, held in a location down the block (car travel makes me flare) with squishy furniture (the only kind I can sit on comfortably, and even then for a maximum of 30 minutes), multiple bathrooms (I have interstitial cystitis, among a host of other things, and those of us with this condition always feel like we have to pee), and maybe donuts (although only a few of us could eat them given the number of special diets chronic pain patients are advised to follow). I would like to be surrounded by others with unrelenting pain, to feel connected to a fellowship of sufferers whose daily victories of staying alive and getting out of bed are remarkable accomplishments. I want us to be able to gather, a logistical impossibility due to the fickle nature of chronic pain, leaving us without the ability to plan activities as we never know if today will be a “good” day or a bad day, with good days being relative. Once you become a chronic pain warrior, you feel a pang in your chest for the “before” days, when pain was not yet your constant companion, when you rolled out of bed ready to take on the world, without a thought about your body parts.
I know what it is to fear the light of morning, to watch friends fade away, to disappoint family members who wanted you to be somewhere for celebrations, and, perhaps worst of all, to sense a whiff of dismissal or condescension from the medical practitioners whose diagnostic and treatment skills you have often waited so long to benefit from.
I suspect chronic pain is like parenthood. It is nearly impossible to truly understand until you have experienced it yourself. I am not a parent and do not attempt to give parenting advice. However, it amazes me how many people I interact with who do not have chronic pain feel free, entitled even, to dispense opinions and make judgements. For instance, I have lost count of the number of perhaps well-meaning people who have pronounced water-based exercise as a panacea for my pain. I have a skin condition that flares from contact with chlorine which rules out all of the public pools in my area. I would love to try a salt water pool, but the only ones in my county are privately owned. I am not friends with those lucky enough to afford one, and I live hours from the sea.
While I have blessedly found treatment options that keep the darkest pain at bay, I know what it is to hurt so badly that the thought of taking a kitchen knife to cut out the painful spots seems nearly a sane idea at 3 a.m. when you have given up the pretense of trying to sleep as the pain continues its gouging. I know what it is to lie in bed, sheets soaked with tears and sweat, attempting to remain absolutely still, knowing that movement of any kind will set off a chain reaction of pain that rattles your teeth. I know what it is to experience nerve pain so intense that you are unable to use your arm to feed yourself, to lift your foot in a normal gait – making do with an odd kind of shuffle so as to not jolt the intensely painful spot on the top of your right foot that, without any warning, started screaming in pain several days ago. I know what it is to ache so badly in your muscles and joints that initial steps out of bed make you look like a toddler while feeling like a victim of torture, and how it can take up to an hour before attempting the stairs down to the kitchen where breakfast is waiting. I know what it is to beg the heavens for any kind of relief, to bargain with the devil and agree to lop minutes, hours, days off of your life if the pain could just be dialed down enough for you to think clearly. I know what it is to have stabbing, scalding pain in your pelvis, causing spasms that involuntarily bend you in half. I know what it is to plead with your nervous system to lose consciousness or your mind to dissociate so that you can live through the jolts of pain that slam through your body. I know pain. I live it every day.
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As a chronic pain warrior, the most important characteristic I look for in a care provider is honest-to-god empathy, from someone who truly listens and tries to meet me where I am, not where they think I should be. Lori is one of those people[i]. I am very lucky to have her and her expertise with CranioSacral techniques as part of my care team, along with others who excel in acupuncture, rolfing, physical therapy, and other healing methods. (I cannot even contemplate where I would be without these treatments, as such ruminations are very grim indeed.) These are individuals who have chosen careers as helpers. They listen to my words, and my body, and treat me as a whole person. What a refreshing change it is to walk into their offices as opposed to some of the “ologists” I have seen who make contact only with their screens and never with my eyes, who hush me as I try to tell my story, preferring to review blood work and testing results instead of hearing about my journey into pain, or who focus solely on treating my thyroid or liver or colon as if I am an organ specimen before them.
As a writer, I have covered the topic of dismissive medical personnel in other work. I feel certain that all of us who identify as chronic pain warriors have stories to tell. They are tucked away on our memory shelves and come back to haunt us in the lonely hours. I have had medical personnel explain that the first possible cause of my long and varied (and frightening) list of symptoms would be psychiatric issues. One doctor wondered if maybe my bra was too tight. I was asked if I might have performance anxiety, with the shockingly inappropriate implication that this could mean in my role as a professor, or in the bedroom. I have been told, with great confidence and disdain, that my symptoms are not related to a particular doctor’s area of expertise, only to find out later that this is not at all the case. I have lost track of how many medical providers have said some version of, “I have never heard of anything like that before,” as their words grow ever quieter toward the end, trailing off and leaving me with the distinct impression that they doubt my experiences. I am also the patient Lori mentioned who encountered the doctor who gleefully told me what a 10 really was.[ii] The laughter haunts me.
For many years, I held these encounters and blistering words inside and replayed them in my mind, over and over, to the point where I nearly started to doubt myself. These were experts in their fields. Their words carry a weight they may never fully realize. Words wound, inflicting the deepest slashes on those already in pain, already taxed in body and mind, already vulnerable due to the enormous effort required to simply exist. I cried about these words and the laughter and the sneering looks for far too long. And then I got mad. Now, unless utterly without another option, I refuse to return to any care provider who does not treat me with respect, as a person in pain who deserves some relief, and to be heard.
In my ideal world, where I retreat in my mind while my body is fighting its own wars, I would work to change the system. I have read endless articles, blogs, and books that describe how patients can be more prepared for their doctor visits, how I, as a chronic pain warrior, can get the most out of a 15 minute appointment, and how to communicate with your busy, overworked doctor. I get it. Some patients are just annoying. And those with chronic or mysterious, ongoing conditions are difficult to manage. As a patient, I have been well trained, socialized, and reminded to carefully listen to my doctors, take notes, and to studiously follow their recommendations.
Now, I’d like to flip the script and prioritize the power of true listening for health care providers, starting with medical (or nursing or PT or pharmacy, etc.) school and continuing on throughout a doctor’s years of practice. Yes, organic chemistry is important for future medical providers to know. But so are appropriate and supportive interpersonal skills. We cannot simply assume that everyone possesses these skills. Those assumptions have gotten us where we are, to the place where patients in pain hear the kinds of things Lori and I have outlined.
As a professor, my students evaluate me each semester, in every class I teach. This information is used as part of annual performance reviews, contract renewals, and promotion. If there are communication problems or complaints about the conveying of course material or comments about a lack of respect shown to students or any other noted challenges, faculty members are expected to address these concerns, and their subsequent evaluations better show some improvement.
Perhaps it is time to do something similar with healthcare providers. I know they are already burdened with never-ending forms and charts, but they would not need to complete any additional paperwork. Patients like me would fill out an evaluation. And, if there are issues, if there is a pattern of communication difficulties, if there are patients who are not feeling heard, then it is time for an intervention.
Just as those who acquire too many speeding tickets or driving violations must attend special safety seminars to keep their licenses, doctors with poor evaluations related to communication should have to attend workshops about interacting with patients. Their licenses would be suspended until they could clearly show, in case after case, that they are able to respond appropriately and empathetically to those in pain. Just as drivers must meet certain standards to be let back on the road, doctors would have to work with mentors who observe their interactions until it is safe to let them return to seeing patients. When they have learned to listen and not sigh, when they have learned to listen and not talk over the patient, when they have learned to listen and not dismiss what a patient is desperately trying to tell them, when they have learned to listen and not laugh at an incredibly vulnerable person in pain, then, and only then, shall we release them back to care for, and listen to, patients.
Are you a healthcare provider who truly listens? Before immediately saying yes and moving on, ask your spouse, your children, your staff, your colleagues, and even your patients. Do they agree? If so, you have my deep gratitude on behalf of chronic pain patients. If the answer is no, I beg you to sign up for a communications-related continuing education opportunity through your professional organizations, take a communications class at your local community college, or ask a colleague you know to be an expert patient communicator to mentor you and perhaps let you shadow.
Healing comes in many forms. Listening ears and eyes and hands may be the most powerful tools you possess. Use them wisely and use them widely. Legions of chronic pain warriors will be eternally thankful.
[i] Rice, L. L. (2017, September 11). To Err on the Side of Listening. Retrieved October 03, 2017, from https://www.theideacrucible.com/articles/listeningarticle
[ii] Rice, L. L. (2017, September 11). To Err on the Side of Listening. Retrieved October 03, 2017, from https://www.theideacrucible.com/articles/listeningarticle