Communication with patients and about patients is engrained into the A Life in a Day core. Patients help complete the impact and purpose of A Life in a Day – from contributing their stories to help create an immersive experience, to seeing the changes made by pharmaceuticals and HCPs as a consequence of participants going through the experience that they helped create.
With the language around patients ever evolving, it’s important to ensure that we both listen and speak around patients correctly. We asked Creative Lead Bev Bryant her thoughts on the importance of speaking a patient’s language:
What’s the difference between ‘suffering from Crohn’s Disease’ and ‘living with Crohn’s Disease’?
Or ‘an obese patient’ and ‘a person living with weight’?
And how about ‘unpaid carers’ and ‘loved ones’?
Language, that’s the difference, and how the words people use to describe someone can have the ability to disempower, stigmatise and even demote a person’s life role in an instant.
I am writing this article in my capacity as a Creative Lead at A Life in a Day, where I have the very great privilege of speaking to people about the challenges and choices, they face living with a long-term health condition or disease.
However, I also wear another hat daily. I have lived with Crohn’s Disease for over a decade. Never suffered from it. I live with it.
It might seem like a subtle difference to some, but to me it’s enormous.
I remember the first time a doctor told me I suffered from Crohn’s. I was insulted!
I am strong, I am capable, and I am challenging. I’m not a victim, a casualty, or a sufferer.
So why is it so important to speak your patient’s language?
And I’m not talking about just avoiding using medical jargon, that’s a given in good clinical practice.
I mean using words that reflect their lived experiences of their condition.
I have spoken to many people about their experience of being diagnosed with a condition or disease and often what they remember so clearly is the words with strong negative connotations and the emotions those words evoke. For example, cancer with death.
And it isn’t just the words used by clinicians that can have an impact on people.
How many of us have heard or used the terms ‘they lost their battle with cancer’ or ‘you’re so strong, keep fighting’?
Cheryl Johnson, a professional photographer and contributor to the A Life in a Day lung cancer experience, who also lives with stage 4 non-small cell lung cancer, explains why metaphors like this can have such a negative impact on a person.
“I saw a social media post about a lady I knew who had died of cancer that said something like ‘she lost her battle’ and it made me want to scream.
No, her body could take no more. She didn’t give up. She didn’t lose the battle.
And I get people tell me I’m the strongest warrior they know.
They’re not seeing me sitting on my couch in my sweats, just a lump and not wanting to do anything.
No, I’m not the strongest person, you know, by far. No one chooses this. No one wants to be doing this.
I guess they’re only trying to be nice, but I just think sometimes there are better ways.”
Maya Angelou said: “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
So, it’s the impact of your words and actions that people will never forget and that’s why we need to learn to speak our patients’ language.
Of course, terminology will change over the years and no two people will use the same language, but it’s important to listen and take the lead from them, and if you’re not sure what words they prefer you to use, it’s OK to ask because they will definitely tell you.
And yes, in my unique strong, capable, and challenging way I did correct the doctor who called me a sufferer. I hope they learned from me how important it is to speak your patient’s language.