Living with a chronic illness necessarily means that you aren’t a stranger to doctors, nurses, needles, X-rays, procedures, etc. However, simply having an abundance of experience doesn’t mean it is always easy to interact with medical providers – especially in situations where you don’t feel well.
Recently, I had an experience that tested my patience as a patient to the limits.
After a more than a month of a nasty cold and cough, I started developing pain in my upper ribs. The first doctor I saw told me the rib pain was from coughing and gave me some antibiotics. But, while the cough went away almost entirely, the pain in my ribs did not. Instead, it got worse and it spread – to the point where I was having trouble functioning and taking care of my kids. When my mom pointed out the pain might be from an infection, I knew it was time to go back to the doctor. However, even though I knew going to the doctor was the right thing to do, I was honestly reluctant.
I put off making an appointment – holding on to hope that the problem would go away on its own – until one day the pain got to be too much. Of course, by the time I admitted it, there were no more same day appointments available. In the end, my mom came over to stay with the kids and my husband came home from work early and took me to urgent care. While I was glad not to have to go alone, unfortunately, the experience turned out to be just as exhausting and frustrating as I had feared.
Literally, every person I interacted with during the visit did something to make me feel worse, instead of better.
It started with the nurse who checked me in, who looked at my chart and said “Oh! RA? But you’re way too young for that!” If only I had a dollar for every time I’ve heard that one! He then proceeded to ask me a bunch of questions about RA and my treatment, clearly demonstrating that he had no knowledge of the condition whatsoever. So I found myself, while already exhausted and in a great deal of pain, grudgingly educating my own nurse. No, RA isn’t hereditary. Yes, you can be diagnosed at any age. I told him it was the RA and my immunosuppressant medications that made me particularly concerned about the rib pain. After what seemed like an eternity, he finally left to get the doctor.
When the doctor finally came in, she started off with “so, you have a cough?” I took as deep a breath as my rib pain would allow and started my story, again, from the beginning. I had a cough. Then the cough went away but the pain got worse. I have RA and I’m concerned it might be an infection. The moment I mentioned the RA, the doctor’s manner changed noticeably. Apparently, the nurse had failed to tell her that I’m immunosuppressed – for which the doctor seemed rather accusatory towards me, even though I had clearly told her nurse that particular detail.
She wouldn’t tell me to stay and she wouldn’t tell me to go.
The doctor then asked if I wanted to leave urgent care and go to the emergency room –she kept emphasizing that I was a “special” case because I’m immunosuppressed. I asked if going to the ER is what she would recommend, but she simply wouldn’t answer the question. She wouldn’t tell me to stay and she wouldn’t tell me to go. I began to feel very overwhelmed by what seemed like an expectation for me to direct her when in reality we had come to her for advice because we didn’t know what to do. In the end, my husband said we would stay since we were already there. The then doctor poked painfully at my ribs and asked me questions about my pain. However, since I had been resolutely ignoring the rib pain for weeks, I struggled to describe my pain accurately. She looked dubious but said she’d order some blood work and an X-ray.
A different nurse came in to draw my blood. She was perfectly nice and friendly, but she also started her conversation off with “so, you have a cough?” leaving me to start my story over for the third time. She also missed my vein on her first try, despite poking around painfully trying to get it. Her second attempt at drawing blood was successful, but by this point, I could feel myself wanting to cry – from pain and from running out of patience for the whole process.
A little while later, the X-ray tech escorted me to the X-ray room. When she said “so, you have a cough?” I almost lost it. I explained my story for the fourth time, holding back tears of frustration and exhaustion. I probably sounded rather exasperated, because she looked defensively at her paper and said, “well, it says here you have a cough.” She didn’t say much of anything to me after that.
When the X-rays came back, the doctor took me into the hallway to show them to me. She said my lungs looked clear and that there wasn’t any sign of an infection. In a complete flip from her earlier questioning about whether or not I wanted to go to the emergency room, the doctor was now behaving as if I was overreacting about the whole thing. She kept saying things like “the results aren’t matching up with your story.” When I started to cry she gruffly asked if I was ok. I said I was just feeling a little overwhelmed, to which she defensively replied, “well I’m certainly not trying to overwhelm you!” But whether or not she was trying to do so, it was clear that she had.
In the end, I left urgent care with the diagnosis that “it was probably just external pain” and a prescription for some pain killers (which, due to regulations on “controlled substances,” were a real pain to get – but that’s another story!). I was completely exhausted and in a lot more pain than I had started out with. You’d think that almost a decade of regular experience in medical settings would have left me better prepared for this type of situation, but instead, I just felt frustrated and defeated.
Living with a chronic illness and taking immunosuppressants makes it even more important for me to seek medical care in these types of situations, but experiences like these often make me reluctant to do so, even when I know I should. And this makes me wish that doctors could offer me a prescription for patience – because as a patient you often need a whole lot of it!