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Social media can be valuable to connect with others, seek validation for your concerns and help reduce feelings of loneliness and isolation. It can also be a source of support, information and a way to share your experiences.

However, it’s important to recognise that not all the information you read is reliable or accurate. Even when a post comes from a family member or friend, the information may not apply to your situation.

Navigating health information on social media

When scrolling on social media for health-related information, take a moment to consider the following:

  • Information source: Determine where the information is coming from. Is it from an established organisation like MS Plus, or is it an individual sharing their personal experience?
  • Cross-check: There is a wide range of information online, and often there are extremes and unproven claims. It’s a good idea to cross check any health information on reputable medical or health organization websites to ensure accuracy.
  • Talk to a medical professional: When in doubt, bring the information you've found to a healthcare provider or ask a MS nurse. They can offer their expert advice which is tailored to your specific needs and situation.

Sharing personal stories on social media

Posting a personal story online can be rewarding and help us make sense of what’s going on in our lives. However, it’s important to be mindful of what news and experiences you share online.

A story could also attract negative comments and opinions, and this could lead you to judge yourself harshly or unfairly and can be overly immersive.

Before sharing personal stories online, particularly if it’s involving the person you are supporting, it’s best to talk with them about what information (if any) they want shared.

Make sure you pause before you post!

Things to consider when sharing a story online

What’s my purpose?
Think about why you want to share the story. Is it to inform, educate or share what has been helpful to you?

What is the exposure and consequence?
You will need to consider the consequences of what you plan to share. Publishing the story online can open people to judgements and stress and leave them feeling overwhelmed. Once your story is out in the public domain, then there is no going back.

Am I being honest?
It's best to share your story from your own viewpoint. You are the expert, so be yourself.

Are other people involved?
It’s important to consider the following: Will your story include other people? Do you need to seek their permission prior to telling your story? Will publishing the story affect them?

How much am I prepared to share?
There may be parts of your story that you wish to keep private. You do not have to tell all of your story and you don’t have to answer questions you do not want to.

What emotional response will this bring up for me?
Telling your story may be an emotional experience. Consider what supports you have around you before and after sharing your story.

How private do I want to be?
To ensure the right amount of privacy, think about if you want to use your name, remain anonymous or use an alias.

Social media provides opportunities for connection and meaningful interactions with others. However, it’s important to be sensitive when telling personal stories, especially when they concern other people. By doing so, you can make your online experience more valuable and enriching for both you and your audience.

More resources are available in our Carers, Family & Friends Toolkit