When I was diagnosed with Type 1 Diabetes 11 years ago, I was in such a paradoxical space. My mind was like a vacuum, empty and numb, and at the same time I was bombarded with information, numbers, names, dosages and techniques.. and it was overwhelming to say the least. And in that very instance, all I really wanted was someone to look me in the eye and say “its going to be alright” ..
The world of health is often fraught with words that sometimes bring more “fear” than “comfort” to a person already struggling with living a life filled with doubt and uncertainty. This is done with good intent by our doctors in an attempt to provide clarity and advice, but for a person like me who is actually living with a condition, it provides less motivation and more hesitation.
The words, phrases, and the way they were being used by those around me, and those close to me, wove into a deeply subconscious narrative that made me feel like I was a “patient” "suffering" from diabetes. It was only much later did I truly feel the weight of these words.
We live in a world today where we are constantly internalising the messages we get from social media, the news and the conversations we hear and participate it. And we don’t realise the effect of these words and phrases until we start believing them. Thats why, The Diabesties Foundation was involved in creating the Indian version of “Language Matters” Diabetes - to discuss the role of language when dealing with Type 1 Diabetes in our country. We worked with our colleagues in the UK who developed their version in 2018 and adapted part of that into the Indian document as well.
Language has such an important role in healthcare. And more so in a chronic condition. Since there is no cure, your health care professionals almost become lifelong partners in your journey of management. To build a relationship based on honest communication is paramount. Unfortunately, because of time constraint, overwhelming number of patients and other external factors - in India specifically, a doctors appointment just becomes something to check off the list. You spend maybe 2 minutes with your doctor and its often just writing prescriptions and giving instructions. There is no equity in the partnership at all - and that does nothing to empower the person living with diabetes..
As people with diabetes, we want to have someone we “chose” to go to and are not forced to go to. We have heard some disheartening stories about hcp’s using scare-tactics to influence their patient. And thats where the role of this document comes in.. We have tried to broadly cover some of the philosophies we as people living with diabetes would like to see in these interactions.. and it’s now grown into a global movement. Recently, the Language Matters website was launched to become an evolving home to all the wonderful pieces of work done by people all over the world (www.languagemattersdiabetes.com). And it's so heartwarming to see so many people who believe in this concept, and it also proves that there is a need for it as well.
In my opinion, these pieces of works are not meant to be rule books. They are simply meant to offer some perspective. Hear from the voices that are speaking from lived experience. These documents don’t just talk about ‘phrases and words’ that can be substituted with friendlier alternatives; they also discuss things like non-verbal communication, language that family uses and basic themes that can make the conversation less confrontational and more collaborative. I think collaboration is the bridge that truly connects these seemingly disparate worlds and this document is a testament to what collaboration between HCPs and PwD's can look like! A genuine shoutout to Prof Partha Kar who is an inspiring example of bridging that gap and highlighting the equity in the partnership!
For me personally, Language Matters has never been about words - it’s always been about the intentions behind the words. It’s always been about how a smile can promise things no amount of words can. It’s always been about kindness. It’s always been about listening with your senses. It’s always been about co-creating ones treatment plan and being considerate and caring about invisible battles that sometimes leave no scars.
According to me, Empathy is the most basic foundation that should create the fabric of any conversation. Everyone is going through something that we don’t understand.
and if that is weaved into the conversations we have, not just with HCPs, but with everyone in general, we can become kinder, more loving and more understanding.
As someone living with T1D, we want to be confident that our HCP’s, our friends and our families will become our confidants. We want to know that you won’t judge our values, won’t scold us for being too high, and won’t scare us with complications ..
We hope that you will see the names behind the numbers. The stories behind the stats and the people behind the patients.
And i don’t think Language Matters only pertains to healthcare. I think now, more than ever, we need to know that the language we use can play a deep role in our lives. Does this mean that you must weigh your words? Not at all. It simply means, that we can all be a little more empathetic when we are speaking to those who we know nothing about..
Because in the end, we are human by chance, but we can most certainly be humane by choice..