Approach 2: Communication and storytelling. How to create clear messaging and share personal stories safely.

This approach includes the following key tools:

  1. Living with a rare disease: Digital mental health resources
  2. Checklists for listeners and storytellers

Just as there is no one way to advocate, there is no one way to communicate. There are many different communication styles and approaches. Effective communication is crucial in advocacy as it empowers people to convey their messaging in a way that positively influences decision makers.

Once you have a clear idea of who the specific stakeholders you are targeting, ensure your messaging speaks to its intended audience. This is so they can grasp the key points quickly and participate in the call to action if they choose to.

Clear, accurate, consistent, and evidence-based information is especially important in rare disease. It builds credibility and reduces the likelihood of confusion, overwhelm and misinterpretation.

We are people, there is the sector and the dollars, there’s diagnosis and there’s research. There are all these things, but it really often forgets… the human experience.”

Person living with an undiagnosed rare disease

Quality communication is essential for building and maintaining relationships/partnerships, maintaining attention, fostering connection, and enhancing engagement and participation. It can also help to secure the resources required to work towards a shared goal.

Typically, it’s best to map out a communications plan and test what is and isn’t working through whatever measures are available (for example, email open rates, Google Analytics, social media analytics, uptake of any calls to action etc). It is important to be open to learning and receiving feedback while continuing to advocate.

Keep in mind that ‘communication’ is a broad term and encompasses a range of approaches. This could include social media, traditional media, email marketing, follow up phone calls and meetings. Different approaches may require different language and messaging. For example, communicating via LinkedIn generally requires professional language and is useful for professional networking. In contrast, Facebook is more suited to communicating with families and communities.

“When there is so much that needs to be done, it can be tempting to call for a whole list of changes, resulting in a myriad of messaging that can be overwhelming, confusing, or unfortunately, come across as venting or complaining. A clear, targeted, and nuanced message is often much more effective.”

Nicole Millis32

A powerful way to communicate is through storytelling.

The experiences of people living with a rare disease can be valuable in several ways.

Storytelling is not only an approach that can be used effectively by people living with a rare disease. Health professionals may also have powerful experiences to share, which can highlight the needs of people living with a rare disease. They can also identify and call out the barriers and gaps in the health system and suggest solutions that may improve care and support.

Stories of someone’s diagnostic journey and experience managing their condition could be beneficial to clinicians and other health professionals to identify symptoms, make a prompt diagnosis and optimise treatment.”

Person living with a rare disease

Ways storytelling may be incorporated into effective systemic advocacy as part of a wider strategy:

  • To demonstrate key messages in advocacy or policy documents, emphasising the power of co-design with people living with rare diseases
  • To support submissions to the Federal or State Governments for funding research and/or new technologies
  • To provide insights into the impact and challenges of living with rare disease. These insights can increase the impact of educational resources and guidelines.

While storytelling is a powerful approach, there are several things to consider to ensure storytelling is carried out safely and effectively.

  • The person sharing their story must consent to their story being shared, and should know where, how and for what purpose their story will be shared. For example, Rare Voices Australia has a consent form for their Share Your Story section which is available online.
  • Every person is an individual, so their story and the way they share their story will be personal and require individual approaches.
  • Sharing stories can be distressing. Sharing RVA’s digital mental health resources fact sheet with the storyteller may be helpful.
  • Some people with a rare disease are asked to share their story repeatedly. It is important to consider how many times someone has shared their story. When the same people share their story frequently, it can re-traumatise them. The checklists below may be helpful for people who are sharing their stories and for those listening to and sharing other people’s stories.

Lived experience is very lengthy and I think that story telling is a series of experiences. It can be traumatic to revisit issues. It is also bold to share such life details and a person’s willingness to do this must be valued.”

Person living with a rare disease

The Living with a rare disease. Digital mental health resources fact sheet, developed by the RArEST Project, provides mental health and wellbeing support for people living with rare disease. It is a useful resource to share with storytellers. It includes links, resources with useful information, support, and skills.

The checklists were adapted from the Health Issues Centre’s The Kit: A guide to the advocacy we choose to do33 and the Medics4Rare Diseases Rare Disease 101 Australia, Lesson 4: Respectful and Effective Communication.34 Please note: these checklists are generalised and should be used in conjunction with culturally safe practices for Aboriginal and Torres Strait Islander peoples, and culturally and linguistically diverse communities.

Checklists for listeners and storytellers

Checklist for listeners

When listening to someone’s story:

□ Clarify the purpose of their sharing. Do you have consent to share their story?

□ Be mindful of the space in which they are sharing, and create a safe and non-judgmental space

□ Show you are actively listening, by making eye contact and being aware of their body language

□ Engage respectfully, giving them the time they need to share, and allowing them to stop whenever they need

□ Refrain from interrupting the person sharing their story

□ Be mindful of your own biases and reserve personal opinions and judgement

□ Explore nuances, whilst being mindful to not press for matters that are sensitive or traumatising

□ Ensure the storyteller, and others in the group (if relevant) are aware of support services should they be traumatised by information shared

Checklist for storytellers

When sharing your story:

□ Remember, your story is yours to tell and you are not obligated to share.

□ Decide on what you are comfortable sharing, and what you need to make the process easy

□ Prepare, as much as possible, thinking about what you would like to say and identifying topics that are ‘off limits’

□ Consider, the ‘take home message’ you want to leave with your audience. What would you like them to do in response?

□ If telling your story in first person (I, me) feels too personal, consider using third person (he/she/they)

□ Consider the sharing environment you are in and the purpose of sharing your story

□ Ensure the audience listening to your story has asked for your consent

□ Ensure the audience you are sharing your story with has been transparent about the use of your story and willing to mention your privacy if you wish

It is important to support the storyteller, as sharing a story can be emotional and potentially distressing. Everyone has the right to share their story in a way that feels safe and comfortable.

Ways to provide support include:

  • Making sure the storyteller is prepared before they start sharing their story
  • Having a trained and experienced staff member present when stories are being shared
  • Establishing guidelines for what is appropriate to share
  • Encouraging storytellers to share their stories in ways that are strengths-based and solutions-focused
  • Checking in with the storyteller afterwards

Engagement needs to be with both individuals and organisations, to have more of a breadth and diversity in those voices, also being mindful of fatigue. Depending on the population, the same people are being tapped on the shoulder all the time.”

Person living with a rare disease

Those who are newly diagnosed or early in their rare disease journey may need close monitoring and/or additional support. These people may feel traumatised or demotivated by the stories of people further along in their rare disease journey.

Information about mental health support resources is available on the Rare Awareness Rare Education (RARE) Portal. State-specific resources can be found under the ‘mental health’ subheading of each respective state and territory.

People who are distressed during or after the storytelling process can be referred to crisis help lines:

Lifeline: 13 11 14

Beyond Blue: 1300 22 4636

13 YARN (Aboriginal and Torres Strait Islander service): 13 92 76

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