The Snarky Voice
In my seven years as a “professional patient,” I’ve had more than my fair share of bad experiences with medical professionals. I once had a psychologist tell me that I was making myself sick. I’ve had physical therapists give up on me after a few weeks with no improvements. I’ve had nurses insist I choose a number on their numerical pain scale – and then not believe my honest answers.
These experiences range in severity from almost funny to extremely frustrating to downright emotionally damaging. But they all have one thing in common: they have made it difficult for me to keep an open mind when meeting new medical providers.
Recently I have been dealing with some pretty severe neck pain right at the base of my skull. After a few weeks of applying heat and stretching and extra NSAIDs with no improvement, I finally broke down and emailed my rheumatologist to see what he suggested. He asked me to try PT, so this morning I met a brand new physical therapist.
She was perfectly nice – all in all it was not a bad experience. In fact, I think my neck even feels a bit better! But throughout the whole appointment I just couldn’t seem to quiet the “snarky voice” in my head.
It started with the paperwork. There was a drawing of a person, front and back. “Please mark the appropriate area of the diagram to show the location of your current symptoms.” I knew I was only there for my neck, but the snarky voice said: Can I just circle the entire person? That would probably be more accurate!
Then “List the medications you are now taking.” Half an inch of space isn’t going to be enough room for that!! Do you want me to start with the $10,000 biologic medication or the weekly chemo drugs? The steroids? The NSAIDs? The pain killers? The anti-depressants? Can I get an extra sheet of paper?
And finally “Please rate your Pain Level, with 0 being none and 10 being the worst.” My very favorite question of all time!! If I mark 8 and I’m not crying on the floor, will you even believe me? If I smile or make a joke will you think I’m not in pain?
Then I met the therapist and attempted to explain my difficulty quantifying – or even identifying – my own pain. I tried to put into words the vast amount of effort I spend ignoring my pain on a regular basis, just so it won’t send my life into a downward spiral. I think she hears me. Does she actually hear me? I think she understands. Does she actually understand? Without chronic pain herself can she possibly understand?
After the exam and some adjustments and stretches, she sends me out to her assistant to learn some strengthening exercises. One of the exercises involves pushing my head against my hand to work on the neck muscles. I tell him that isn’t going to work for me because of the pain in my wrists. He is puzzled for a while. Have you never treated someone with more than one issue? Chronic pain? Pain all over the body? Eventually he comes up with an acceptable modification.
The appointment ends with heat and electrical stimulation. The therapist tells me that she would like me to come twice a week. How am I supposed to accomplish that? I’m already using my very limited childcare time to be here when I really ought to be working so I can pay my medical bills. Can I bring my babies to the appointment with me and let them run around? I make a follow up appointment.
On the way out, the receptionist tells me that my insurance won’t cover any physical therapy until my whole deductible is paid. Of course they won’t. Why would my insurance be helpful and supportive of my health without me paying zillions of dollars?
The snarky voice wasn’t interested in keeping an open mind or giving anyone the benefit of the doubt. But here’s the thing: the snarky voice isn’t just being negative or difficult. The snarky voice is a defense mechanism I’ve developed based on my past experiences. It is there to fight and protect me, steeling me for the chance that this might be yet another bad experience. Giving me the strength to shake it off if it is.
I actually appreciate my snarky voice - but I don't let it control me. I hear what it has to say in my head, and occasionally I repeat it to my husband and we both have a good laugh. I use the snarky voice to vent the fear and frustration that comes with dealing with a chronic illness in a very burdensome health care system. But I try not to let the snarky voice make judgments in advance. Despite what the snarky voice might be saying in my head, I do honestly try to keep an open mind when meeting new healthcare providers.
Has having RA put a hold on your ambitions?