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Performance Act: A discussion on the not-so-intimate patient-provider interaction. Can we do better?

Chroniclife means having two careers: one in which I talk to patients all day, the other in which I help other people learn to talk to their providers. And here I am, with a provider that, for the life of me, I cannot seem to get on the same page with. 

At what point do you part ways? The patient-provider relationship is terribly intimate…yet, maybe not that intimate at all. Intimate in that yes, your hands are under my armpits to feel my lymph nodes. Intimate, yes, in that I will to admit to you that my mouth ulcers and my right hip inflammation both impact my sex life. But…not nearly as intimate as the relationship I have with my disease. 

I see my doctor every 3 months; I say ~whaddup~ to my arthritis up every 3 hours or so. The mornings I struggle to walk Bruce, the times my boyfriend climbs the stairs to do my laundry for me, the times my coworkers and I joke about decorating my crutches or find me meditating/deep breathing in the stock closet…my doctor doesn’t see those moments. That intimacy is not shared. Maybe, if it were, we’d click. Is this why we don’t connect? 

Is it because I have a pretty positive, upbeat, downright bubbly affect—that my pain is second-guessed? Not taken seriously when I, with a smile, explain how seriously it impacts my level of functioning? Like a long-term relationship wearing thin, do we rekindle things? Try to find a different way to communicate with each other, to hear and listen to each other? Or do I pull a “it’s not you, it’s me. Thanks for all of your help” and start the obnoxious process of trying to see a different specialist…perhaps one more familiar with autoinflammatory (not autoimmune) diagnoses. 

Back in the summer, I decided to see if I could see more progress than what I was seeing on Kineret. Kineret worked, but I felt like I was settling. I’m 24, I still needed pain meds…why not try to keep pushing forward? So we switched to Actemra and I saw some small changes: less stiffness in my hands, fewer fevers. But by October, the stiffness in my hands, the log-rolling myself out of bed via my sheets, the moments of meditation in the clinic’s autoclave room increased tenfold. I found myself with inflammation in my right hip. Last month, that inflammation popped up in my left hip, too. The bad days outnumber the good days. Simply put, I was happier and healthier on Kineret. Maybe I was overzealous. Maybe I was selfish or foolish to think we shouldn’t settle. Maybe it was naïve. I don’t know. Hopefully my motivation was understandable. I do understand why it could be frustrating for my provider. So today, I told my rheumatologist that after ~8 months on Actemra, I wanted to switch back to Kineret and asked what his thoughts on this were. Today, I was okay with settling.

Let me just pause. I am 24 years old, a budding career, a wonderful/active life—and I am actively settling for the best I can supposedly get. It was not received well. He suggested another anti-TNF medication….even though my genetic tests results and previous medication history all suggest IL-6 and IL-1 inhibitors are the best options for me. 

He did a clinical exam. Mind you, yesterday I had my hip joints injected. SO when he pressed on the area just below the injection—and I flinched because, ya know, long needle through soft tissue into joint capsule = I am tender—it became a conversation about how my muscle pain likely indicates “a psychiatric component.” Then came the suggestions that I was perhaps depressed. That could not be further from the truth. Suddenly I found myself defending my entire life: I just had my hips injected, I don’t typically have muscle pain, I just graduated with high grades, I work a job I love in a field I’ve always dreamed of being in, I have wonderful friends, I have an amazing boyfriend—we’re moving in together soon and the relationship is healthy, I have the derpiest, silliest, sweetest dog that keeps me moving, I paint a lot, I drink whiskey at our favorite bars and enjoy the outdoors. I’m really, really happy. This is probably the happiest I’ve ever been…depression is nowhere near my radar. My days are spent in the light, pain or not, and for that I am immensely grateful.

 So then he mentioned I must have not been sleeping. Do I admit to trouble sleeping through the night because of pain, at the risk of being told it’s depression? Do I tell him about my meditation and visualization techniques I use to help me sleep, and how well they work? I chose to explain the stress-relieving skills I use. It fell on deaf ears, or rather, it certainly felt that way. 

I insisted on the Kineret or an IL-1 inhibitor that we know has worked in the past, while he insisted on depression. We were not having the same conversation. 

Which was, quite frankly, baffling. I couldn’t figure out how to hear him, or for him to hear me. I tried to be open with him. I told him that I was open to trying something along the lines of Cymbalta if he thought it would help. I told him I absolutely agree that there is a mind and body connection. I didn’t shut him down. Maybe I could’ve done things differently. I don’t really know. But he didn’t hear me, either. 

It didn’t matter that I use visualization or meditation or therapy or exercise to combat life’s stresses. It didn’t matter that my hair and makeup were done and I had a smile on my face. It didn’t matter that my quality of life goals aren’t being met or that my CRP is still high. We didn’t connect. I used every communication technique I use in the clinic and every technique I learn of and teach to other patients like myself. Nothing worked. 

He told the head nurse, S, to start the prior authorization process for Kineret (mind you, the door was open) and the head nurse had the audacity to throw a fit. Yes, I know it is a huge paperwork process—I do PA’s in our clinic for biologics every week, and yes, they and the specialty pharmacies are a pain in the ass. But that gives you NO right to talk so loudly about a patient or a patient’s treatment plan in such a manner. Professionalism is important. If I spoke about a patient like that in our clinic, ESPECIALLY with them around, I would be fired. 

So I don’t know where we stand. Like a relationship fizzling out….maybe it’s both of us, maybe he just…doesn’t get it. I don’t know. Sometimes I feel like the clinical exam is that of a performance act for many patients—be positive enough to assure them you’re emotionally stable, but not so positive that you’re not taken seriously. It’s okay to be tired of putting on a show. 

I’m certainly not going to do it anymore. I was ashamed of myself for lying, for pretending, for minimizing today.

But rather than leaving it on that note. I’m going to let it fuel something more powerful. What could I have done better? How could I have been a better patient? How can I be a better provider when taking a history from my own patients? What actions make me feel listened to, and which of those actions can I replicate in our clinic?

We can do better than this. I know we can. But, we have to end the performance act and empathize, as patients. We, as providers, HAVE to find a way to connect with our patients’ experiences with chronic pain–even if they are foreign to us. Even if we are tired. Even if it takes that extra 5 minutes to phrase a question five different ways so as to get our patient to understand what we need from them. 

We can do better.

Artist Name: JED Lewis 


My name is James Edward John Lewis (hence JED), I am 17 years old and I live in Oswestry, Shropshire.
I’ve been doing photography since around 2008, with it gradually becoming a part of my life ever since.
Photography has gone from a hobby when I’m bored to a visual therapy, allowing others to see how I see the world and perceive it.