Living Like You blogger Willeke shares advice on building a positive relationship with your neurologist while living with multiple sclerosis.read more
Semantics play a significant role in physician-patient communication, yet, it is not uncommon for patients to have trouble interpreting their doctor’s medical vernacular. As people living with multiple sclerosis, the possibility of misunderstanding what is happening inside our body is a frightening thought.
The first time I received the results of an MRI scan of my brain in writing, I was bewildered. Words like multiplanar, T2-weighted, sagittal and FLAIR sequences looked rather dubious to me. What do they mean and how much should I be worrying? Other times, it is the simple words that trip you up. In some tests, ”positive” means that something awful is happening inside your body, and ”negative” means you are fine.
Now, almost ten years since my diagnosis, my knowledge of medical terminology has improved, but it is still nowhere near what doctors use on a daily basis. Of course, they spent years learning medicine – with its vast spectrum of Greek and Latin-derived terminology – so it’s not surprising they forget to translate sometimes.
When doctors rattle off names of medicines and dosages, and then your prescription says something else altogether, things get confusing quickly. In this light, medical misunderstanding is not just frustrating, but a matter of patient safety.
Studies have shown limited health literacy is a “hidden epidemic” that can affect everything from health outcomes to health care usage and costs. Evidently, the more you know and understand your illness, the better you can manage it.
I always say, “My neurologist knows all the technical bits and pieces about the brain and MS, but I know what it feels like to have MS.” Quite often, though, the two act like strangers. As patients, we have a right to understand all aspects of our disease and treatments, but we also need to alert our doctor when medical jargon sends us spinning.
Helping Patients Translate
Patients should be allowed and encouraged to ask questions at any stage in their medical lifecycle, after all, it truly is about them. My general practitioner (GP), for example, always talks in English-English instead of medical jargon when he reads reports and responds to questions, not because I’ve gone all gaga in my mind, but because it leaves no doubt as to what I am dealing with and what the next course of action should be. This way, I feel more secure and at ease within that neurological bubble where MS resides. Continuing to ask questions until you feel confident you understand the answer can make all the difference in your MS journey.
Preparing questions ahead of time and taking notes during neurological check-ups can also help. I often forget what is said, so I take notes as fast as I can. The idea of recording the conversation has also entered my mind, but I’d want to get permission from my doctor first. Inviting a family member or friend to a doctor’s visit is another way to help remember what was said.
Here are a few tips I’ve found to be most helpful when speaking with doctors:
• Use clear language when speaking to your doctor, not overly difficult or Googled medical terms. This will encourage your doctor to respond in a similar, straightforward fashion. “Medicalese” terms found online to describe your illness may not match your doctor’s definition or understanding and could lead to mutual confusion.
• If things feel tense, try using humour to break the ice. Tell them in a funny way that ‘I haven’t covered that part of my medical encyclopaedia yet, so can you please explain?’ Playing a little dumb every now and then can help.
• Don’t be shy, because there’s a good chance that whatever you are worried about, your doctor has seen it multiple times already!