The importance of remaining curious as an online advocate

Online community spaces are vital places for health advocates to find a sense of connection, belonging and support. If you have an online advocacy platform, you are no doubt aware that audiences are as diverse as the needs and conditions they advocate for.

It is therefore essential to recognise that there are inherent tensions in online communities resulting from the varied and conflicting ways in which people navigate their experience of ill health.

Health advocates often find they are met with challenges from those who hold a different point of view to theirs about the 'right' pathways to assessment, treatment and recovery. Whether you write a blog or manage an online forum, it's important to know how to remain vulnerable and authentic yet prioritise your own wellbeing in the face of such exposure. 

Natalie Rutstein, the Lived Experience Lead at SANE, has developed a framework for self-protection which emphasises the importance of remaining curious as an online advocate. Before sharing any content and engaging in conversations with other advocates, she encourages you to ask yourself the following 'W' questions.

Why are you sharing?

Online advocacy should always start with your 'why' – the principle, cause or belief which has led you to share certain information online. Writer and speaker Simon Sinek describes your 'why' as being the vision that is connected to your core values. It should remain at the forefront of all online activity that you choose to engage in. 

Keeping your 'why' in mind will help you avoid engaging in behaviours and dialogue that conflict with your original agenda, especially if others' responses trigger intense emotions and kneejerk reactions in you. 

For example, if your 'why' centres on giving more people a voice, it will be helpful to remind yourself of this before disputing, hiding or deleting a comment or response that challenges the message of your content. Knowing your 'why' will help you stay on the straight and narrow in terms of the integrity of your content and subsequent responses.

What are you sharing?

Being vulnerable comes with a certain level of responsibility to yourself and others – in this case, your audience and other people in your immediate network. It is essential that you approach your online content and communications by carefully considering your duty of care to these people and taking the time to ask yourself the following questions to ensure everyone's safety, including your own:

• Who is this content serving?
  
• Will it be helpful to my target audience and speak to their needs?
  
• Am I creating a safe space online for people to unfollow or disengage if this content contains potential triggers for them?
  
• Have I received consent from individuals in my network if my content includes or refers to their experiences?

Best practice content creation recommends that we share from a scar, not a wound. That's because from a place of recovery, we can successfully keep others and their needs in mind, rather than our need to process raw emotions.

It's important to acknowledge the extensive exposure that accompanies online advocacy. If your content and conversations attract a great deal of traffic or even go viral, you may experience what Dr Brene Brown calls a 'vulnerability hangover.' Rather than reject this, it is important to anticipate it, and accommodate it into your self-care routine in the days after you share content. Doing so in advance - even if doesn't seem necessary - provides a much better way to protect yourself than not factoring it in at all. 

Remember, as loyal as you might be to your online community, your wellbeing and the wellbeing of your loved ones must always be your top priority. If the impact of sharing or engaging online begins to jeopardise your own personal wellbeing and/ or your relationships with loved ones, take time to explore this with a member of your support network or on your own before continuing to engage online.

Who are you sharing with? 

Motivational speaker Jim Rohn once said that we are the average of the five people we spend the most time around. Online exposure is no different. While following or being followed by only five people probably wouldn't be the ultimate goal for social media influencers, Rohn's message speaks to the importance of curating a feed that connects to our 'why' as well as prioritising communities that cater to your specific needs.

If you start to feel like your online community is not aligned with your needs, it might be helpful to start thinking about the impact and influence of your online exposure in a more mindful way. 

For example, you may find journaling about your online triggers, the feelings they evoked in you and the behaviours that they resulted in offers a useful way to then start putting in place strategies to navigate your online world in a healthier way. 

When are you sharing?

Whether you are trying to build an online presence or have an established following, it's all too easy to feel like you have a 24/7 obligation to your community. Some days, however, you may not feel like engaging in any online activity at all, let alone health advocacy. 

Let's say, for instance, a significant anniversary falls on a date that you would usually publish a blog post. In this instance, and others like it, it's perfectly okay not to publish on schedule. It may actually be unsafe and breed feelings of resentment to 'force' yourself to do so. 

The lesson is to always check in with yourself before you engage online in any way, shape or form – health advocacy should always be accompanied by intention, not done on auto-pilot.

Take time to ask yourself a few key questions: will engaging online make me feel worse right now? Am I well-placed to engage with my audience or could I leave it alone for the moment? It's important to recognise when it would be helpful to you – and in the long term, better for your audience – to stay offline. Your online community will understand if you take a day or two out.

What conversations are you engaging with?

Online conversations of a challenging or confrontational nature should be managed using the same strategies as you would in face-to-face interactions. Although intense emotions are easier to convey through a screen than in person, it's important to remember that behind every screen is a real person – that person still deserves respect and the space to be heard and validated. After all, this is at the heart of health advocacy.

In a healthy online interaction, when someone feels heard and validated, emotions are easier to manage and a space is created for both voices to be heard. If you feel, however, that this mutual respect is not being honoured, give yourself permission to acknowledge this and leave the interaction. 

If you feel that an interaction is carrying risk to your safety or that of your loved ones, step away, assess the level of risk and implement other strategies in your toolkit, for example, informing the police.

Enter more challenging online conversations at a pace that works with your energy levels and personal schedule. One of the major benefits of online communication is that the recipient cannot see you so you are not compelled to reply or respond straight away. 

Always take time to think about your words and and their words, and engage in a way that serves you and aligns with your individual needs. 

SANE will be presenting at the HealtheVoices Conference on empowering online advocates on 9-10 November. The conference is hosted by the Janssen Pharmaceutical Companies of Johnson & Johnson.