The Power of Empathy
While no diagnosis of a chronic, degenerative disease can ever be pleasant, mine was pretty rotten. My first rheumatologist left a lot to be desired when it came to bedside manner. For instance, as he explained to me that I had rheumatoid arthritis, he used a model of hands to show how the disease impacts the body. The model featured very advanced symptoms, including swan-neck finger deformity. As a 22-year old with no clue about what rheumatoid arthritis was, I was terrified that my hands would soon resemble the model. I was a wreck.
Things didn’t get any better with that doctor. At one point I was in so much pain that I’d barely slept for three days. I called my rheumatologist asking for something to help with the pain, and he told me that I was already on Vioxx (a drug which would be taken off the market three years later due to increased risk of heart attack and stroke), and that taking a Vioxx was like taking 20 aspirin. I told him that I didn’t feel as if I’d taken 20 aspirin, and that I didn’t notice any positive impact from the drug. He was unmoved. My general practitioner was more compassionate, and prescribed a small quantity of Tylenol with Codeine. This reduced the pain enough for me to sleep, which in turn gave my body the rest it needed to quell the flare, and I began an upward spiral. After crying in the parking lot after another visit with my seemingly stone-hearted doctor, I realized it was time to drive 55 miles to the next-nearest rheumatologist. That was 12 years ago, but when I remember my interactions with him, I still feel vulnerable and scared.
Before switching doctors, I also visited an occupational therapist. Perhaps the professional thought I’d be an interesting guinea pig for her intern, because I was handed over to a college student while she tended to a man with a sports injury. Now, I’ve been an intern myself and have also trained numerous interns, so I understand the value and importance of teaching the next generation of professionals. That being said, it was less than a year since my diagnosis and I was trying to cope with the huge impact RA was having on my young life. I needed understanding. Instead, I got a sweet girl who had no idea that she was saying horrible things to me. She told me about a coworker who had rheumatoid arthritis and had to have multiple joints in her hands replaced. I assume she thought this was a cheery story about the marvels of modern medicine, because she finished the story by saying, “That’s just really neat.” I assure you, as I sat there envisioning the prospect of having my bones removed and replaced with metal or synthetic material the last adjective that I would have used was “neat.”
As more years with rheumatoid arthritis have gone by, I’ve heard what feels like more than my fair share of insensitive comments, ranging from “but you’re so young, you’re not supposed to have arthritis” to “at least it’s not cancer.” Such comments can cut to my core, leaving me feeling misunderstood on top of feeling fatigued, swollen, and in pain. While I know that most people aren’t familiar with rheumatoid arthritis (I wasn’t myself until I was diagnosed with it), hearing insensitive comments from medical personnel really threw me. If people who fully understand the symptoms and ramifications of RA can’t utilize empathy, how are those who are less informed supposed to?
Luckily, some people do get it right. When I changed to my second rheumatologist, I was immediately put at ease by her warm, easy manner. Even though plenty of patients in her waiting room could only move if using a cane, walker, or wheelchair, she always had an expression of concern on her face when examining the swelling in my joints. Once I got to know her, she gave me a big hug at the beginning and end of every visit. Seeing her, I felt that my experience mattered, even if I wasn’t on the verge of surgery. I felt seen, heard, and understood.
I had a similar experience while having a scare I might have multiple sclerosis. I was having several symptoms consistent with MS, and I was aware of this because I had a friend whom I had watched go through the diagnosis and early stages of that disease. When I consulted with my rheumatologist, she said it was possible that the symptoms were caused by long-term use of Enbrel, but she needed to order MRIs of my brain to make sure. The next 10 days of waiting for the two MRI appointments and their results were agonizing. Friends and family kept telling me things like, “Don’t worry, it might be good news” or “let’s not worry until there’s something to worry about.” Yet, when you’re in your mid-twenties and already have one degenerative autoimmune condition, you know that such diagnoses are very real and are indeed possible. At the time, I had only been dating my now-husband for a few months. When I shared with him that I was scared, he responded, “I’m scared too.”
Those words completely validated my emotions, and I felt that at last I was not alone in going through that difficult experience. Empathy can be difficult to feel and hard to express. Many people with good intentions inadvertently say unhelpful and even hurtful things. However, when others are able to acknowledge and validate our reality, it can feel like the very best medicine.
Have you shared tips on how to manage RA with anyone before?