Alexander Graham Bell invented the telephone in 1876, so I’m here in the throes of the worldwide pandemic wondering: Why is my physician insisting I come to her office?
I’m not dying. I don’t need an exam. I have specialists on my treatment team to address my ongoing medical conditions. For the Nurse Practitioner (NP), my primary care provider, I just need to ask some basic questions, no biggie.
I’m only one of countless others with complex medical conditions who are facing a choice: risk exposure to COVID-19 or go without medical treatment. I hear heartbreaking stories from people like me who are trying to opt out of in-person visits for non-emergent issues. Many need prescription refills for their (often life-sustaining) medications. These folks can continue to get them — if they come into the clinic.
Like many others with complicated medical issues, I’m in the high-risk category for becoming seriously ill — or worse — if I were to contract COVID-19. Naturally, I’m avoiding all non-essential activities. I’m even forgoing physical therapy and medical massage, services I depend on for mobility and pain management. I’m telling you, I’m pining for the magic hands of these skillful care professionals with the longing and desperation of a shopper in the toilet paper aisle.
As I voice-dictate this to my iPad, squirming to find a position my body can tolerate, I’m not sure how I’ll get through this time without the pain relief they provide me. Our separation is temporary, I tell myself. This consequential spike in pain is temporary, I pray.
I live with complex regional pain syndrome (CRPS). This is a rare, multi-system disorder that causes one of the highest levels of pain known to mankind. The McGill Pain Index rates the symptoms of CRPS as more severe than pain from unprepared childbirth, kidney stones or amputation. Along with permanent spinal cord damage and a long history of pneumonia, this is only a piece of my medical profile that informs my choice to practice social distancing.
I contact my NP about my upcoming appointment to ask how we could connect without my coming to the office. Her Medical Assistant (MA) calls in response: “She wants you to come in and says you can just wear a mask.” Uh, OK, if that’s her recommendation, I’ll go against my better judgment and deal with the angst. Good girls do what’s expected of them, right? Appointment scheduled.
As days pass, along with more information about the trajectory of COVID-19, I return to my initial inclination: Barring any life-threatening issues, stay put. I remind my provider about my medical vulnerabilities and again request an appointment via telephone or any modality that would ensure my safety. I proactively offer to send my questions via the patient portal prior to our conversation, in order to be respectful of her time.
She doesn’t bite. Apparently, my judgment about caring for my own body — for my own life — is inconsequential to her. I don’t drive due to my disability, and remind the MA that getting a ride would further preclude me from social distancing. Surely, my provider would offer a reasonable accommodation, whether she’s guided by the Americans With Disabilities Act, the CDC’s recommendations, or her own conscience, right? Palms facing upward, index fingers to thumbs, I take a yoga-esque breath, “However she can check in with me, I’d appreciate it.”
I feel especially unsettled because I’ve always had a warm relationship with the MA. She knows I’m a therapist and has talked with me about difficult situations involving her kids. We’ve girl-talked about hair. But today she’s a messenger, delivering formulaic responses (or non-responses) as a loyal employee.
The MA then reassures me that the clinic is “clean,” and I’m “welcome to put on a mask when I arrive.” I repeat that I can’t come in, I don’t need to come in. Could she please accommodate somehow — again, just a couple of questions about my labs. “No.” Boom! My appointment is canceled via the patient portal without my knowledge, without my consent.
“Since you’re not willing to be evaluated at our office…”
Unwilling? The woman in this office, talking to me from a telephone, is telling me to risk exposure because they are not set up for… telephone calls.
“You need to come in because you’re a complex case,” she says. And there it is. I am not a “case.” I’m a person. As a psychotherapist, I’ve always felt squeamish hearing human beings referred to as “cases,” and I’m not thrilled with the reductive language as a medical patient. Oh, how words matter when you’re already driven to a state of frustration.
The irony here? It is because of my complicated medical issues that I need to stay home and protect myself. I remind the MA there’s nothing the NP can do for my incurable medical conditions. I’m not seeking help in that arena, never have from her. I see my primary care physician on occasion for common health issues, like a sore throat. But mostly I see her in my role of rule-follower, a player of the insurance game that dictates “start here” to get the ball rolling for necessary tests and referrals.
My wife gets on the phone and she’s dismissed too. Her fear-based anger uncharacteristically (and appropriately) releases: “Elisa could die if she gets this illness!” My anger at the situation is suspended far away from my heart, which is now just fluff and liquid. My wife is scared, protective of us both, and once again bearing witness to the one she loves not getting adequate care because of her “complex” body. In this moment I comfort her, but I can’t help her any more than she can help me.
For folks with chronic medical conditions and intractable pain, this type of experience isn’t new. It’s just a new low. It serves to magnify the various ways in which we are dismissed, blamed and pushed off to other providers. A typical scenario?
Medical specialist: “Go to the ER.”
ER: “You should have called your specialist.”
I receive a final push to come to the office: “We’re not seeing anybody who’s coughing. They’re being seen outside of the office, so you’re safe.” No mention of asymptomatic spreaders of COVID-19 but thankfully, I read the news.
I’m left thinking this whole situation (one I’d like to wipe away with disinfectant — if I could find any) is about the almighty dollar. Or something to do with insurance? If a medical practice can’t call patients because they don’t have the insurance piece set up, they should say that. Tell me it’s a liability problem. Tell me it’s a cost-reimbursement issue, that patient phone calls don’t add up to enough billable hours. Tell me the provider’s hands hurt and she can’t hold the phone. If any of this applies, I deserve a rational explanation.
Don’t tell me — from your telephone — that your office is not “set up” for phone appointments and then refuse to communicate any other way than in-person. It’s a global emergency. Be a mensch, pick up the phone.
And speaking of mensches, I’m clear that the vast number of medical professionals are taking your professional commitment to an extraordinary level. Thank you for all you’re doing — at your own risk — to ensure the safety and wellbeing of our communities. The same goes for everybody helping us with food delivery and all other essential aspects of our daily lives. This moment calls for compassion and flexibility; you are heroic models of these qualities and more. “Thank you” only touches the surface. Know I speak for the masses when I say this: We see you.
And to the remaining providers who are still insisting at-risk patients come your way, I urge you to revisit your typical approach to professional care. And remember us, your “complex” patients. We have long resumes highlighting our experience and skill when it comes to our own bodies, so let’s work collaboratively. Do Alexander Graham Bell proud and pick up that handy communication device that’s been around for nearly 150 years. So what if it’s not normal protocol. What is normal right now?
About the only thing that remains the same is our collective responsibility to care for one another. Nothing, not even this bizarre shared reality, precludes any of us from being healing forces in the world. Our values are reflected with each action — or inaction — we choose. Let’s shine our lights on one another during this especially challenging time, even if through the glow of a cell phone.
For more on the coronavirus, check out the following stories from our community: