Social Media Ask the Experts

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What we learned from January, Social Media Ask the Experts

On January 20, 2022, the GBS|CIDP Foundation International sat down with Hannah Joya and Melody Olander for Episode 13 of our Ask the Experts Series, “Let’s Get Social,” to discuss their involvement in the GBS, CIDP community and specifically the role that social media plays in recovery, and community.

@Hannahmariejoya

With a following of 12,000 on Instagram, Hannah Joya is an experienced social media influencer in our community. For Hannah’s entire life her father was paralyzed from the neck down because of side effects from GBS and CIDP. In 2018 Hannah published a book in honor of her father who passed away due to side effects of his condition. In her book she talks about her life as a daughter and caretaker and how she and her family use hope and faith to live with the pain that comes along with watching someone close to her suffer.

Never Goodbye, available on Amazon: https://www.amazon.com/Never- Goodbye-Unbreakable-Between- Daughter-ebook/dp/B08XYW93T9

@butyoudontlooksickofficial

Melody Olander is another individual in our community who is informing and encouraging tens of thousands of people looking for help and support as the founder of a nonprofit organization called But You Don’t Look Sick. In 2019 she created an online community on Instagram, with the same name, for people with rare, invisible illnesses that has 43,000 followers. Melody also has a podcast, and YouTube channel where she talks with other people in the rare condition community. And she has published a book with the same name.

But You Don’t Look Sick, available on Amazon: https://but-you-dont-look-sick.creator-spring.com/digital-goods

For Hannah and Melody, sharing their experiences on social media helped them to find a community of people who could relate to their struggles. While it can have its downside, social media is an active space where people can come together to connect and receive support.

Below are tips from our interview with Hannah and Melody for starting or continuing your social media journey that

• Be yourself. Both of our social media experts really stressed how important it is to be true to who you are on social media.

• Be as open as possible. Tell your story and don’t be afraid of the reaction you will receive. Nine times out of ten you will find that the response you receive will be overwhelmingly supportive.

• Posting at certain times does not increase or decrease your reactions. A lot of people think that there is a golden time to post but it’s really the strength of the content you are sharing, not the timing, that matters.

• Reach out to people. Both Melody and Hannah shared special friendships that they had made by connecting with people online.

• Your social media is what you make of it. While there can be a downside to social media, remember that you are in charge of what you post and who you follow so make sure you are following accounts that help lift you up and bring you confidence.

• Take moments to step away from social media. Social media can be overwhelming at times. It’s okay to step away and take a moment to reflect.

• You can create as many accounts as you want. As Melody did, you may want to have a personal account and a separate account dedicated to spreading awareness of your condition.

To see full length episode: https://www.gbs-cidp.org/ ask-the-expert-videocast/