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Let’s talk about lived experience

When it comes to discussions about diabetes, lived experience is essential. Bridget McNulty unpacks why, and how to make it more of a priority in South Africa.

What is lived experience?

Quite simply, lived experience means having a seat at the table any time your condition is discussed. So if there’s a meeting of doctors, or policy makers, or media talking about diabetes, somebody who actually has experience of living with diabetes is part of that meeting.

We welcome anyone with any lived experience of diabetes, no matter the type of diabetes or the type of lived experience. This includes caregivers, parents, children, those working with diabetes and those who want to lend their voices to the cause.

SA Diabetes Advocacy

Why is this so important? Because it places the person at the centre of any decisions being made. It can be easy to think of ‘people with diabetes’ or ‘diabetics‘ as over there, making those lifestyle decisions, taking or not taking their medication. But if there’s a real human in the room, who can talk to what it’s actually like to have diabetes, that makes a difference. It forces decision makers to listen. And scientific discussions to return to what really matters: how it affects the person with diabetes.

How do we ensure lived experience representation?

South Africa is a little slow to catch on to this trend. Worldwide, international conferences have moved towards having someone with lived experience on the programme – often on every panel. Even if the scientific elements aren’t fully understood by the person with diabetes, the fact that they are asked to contribute personally is valuable.

Lived experience is every bit as important as scientific or professional experience.

There are some organisations devoted to ensuring lived experience for people with diabetes at scientific conferences. Dedoc Voices is one of these – you can apply to become a Dedoc Voice and get free access (online or in person) to all the major diabetes conferences. Find out more here!

The #dedoc° voices scholarship program grants diabetes advocates access to some of the world’s most renowned scientific conferences, such as ADA, EASD, ISPAD and ATTD. It ensures the presence of the voice of people with diabetes, empowers a new generation of advocates and provides a dedicated platform for people with diabetes, healthcare providers and industry leaders to meet and exchange.

Lived experience representation in South Africa

So what are we doing to change things in South Africa? SA Diabetes Advocacy has reached out to the diabetes conferences currently being held to check that there is a person with diabetes on the programme, and ask for free passes for diabetes advocates to attend. Find out more about the Diabetes Conference options here. Everyone is invited to attend the Diabetes Summit in Pretoria in November – you can RSVP here!

The SEMDSA Congress is being held this week. It brings together 400 doctors to talk about diabetes, and SA Diabetes Advocacy will have a stand to talk about:

Wish us luck!

Want to get involved?

The most helpful first step if you want to get involved in diabetes advocacy and ensuring lived experience representation is to sign up for our Diabetes Advocacy training course. It’s a free 4-week course, entirely online, and it plugs you into the diabetes advocacy scene in South Africa.

Everyone is welcome!

The SA Diabetes Advocacy vision is:
An empowered, united voice for people living with diabetes in South Africa, so that there is always a seat at the table for those with lived experience of diabetes. 
An inclusive, representative organisation that effects change in diabetes in SA. #NothingAboutUsWithoutUs.

What about you? Do you feel heard?

What to read next?

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Sweet Life is a registered NPO/PBO (220-984) with a single goal: to improve diabetes in South Africa. We are funded by sponsorships and donations from aligned companies and organisations who believe in our work. We only share information that we believe benefits our community. While some of this information is linked to specific brands, it is not an official endorsement of that brand. We believe in empowering people with diabetes to make the best decisions they can, to live a healthy, happy life with diabetes.