Mayo Clinic Champions

Mayo Clinic Champions share their knowledge and experience to help other patients make the best choices for their care. Champions are committed to making a difference in the lives of others facing complex health issues and always advocate for patients.

PUBLIC PAGE
Fri, Apr 27, 2018 8:24am

Tips for sharing on social networks

By Tony Hart, Champion Specialist, @TonyHart87

Social Network MapThere are social networks for almost every disease or condition that are filled with people looking to connect. Social media networks enable you to reach out to others beyond your friends and family, and talk to people dealing with a similar situation.

Whether you are new to social media or a superuser, it can be challenging to talk about your personal health experiences. Review the Q&A below for common questions people have and tips to help you assess what is right for you:

Q.  What if I’m nervous about telling strangers about my condition?

A.  You have a unique health care journey that others can benefit from hearing about. It can be reassuring to know that others share similar struggles and that you can help give hope, empathy and encouragement.

Start talking about your condition when you are ready and comfortable doing so. Many social networks enable you to remain veiled behind a username, so you can safely post with added privacy. Twitter and many online patient communities, such as Mayo Clinic Connect, let you do this when you set up your account.


Q.  How can I find a group talking about my condition?

A.  Searching for your disease or condition within your social networks is a quick method for finding people and discussions related to topics you’re interested in.

If you don’t find any posts because you have a rare disease or condition, or there just isn’t a community out there yet, try being a little less specific in your search. For example, instead of searching for “epithelioid sarcoma,” try “sarcoma.” Or you can start the conversation yourself, so when others search, they can see what you’ve posted.


Q.  How do I know what to post?

A.  If you’re unsure what to post, Mayo Clinic provides a Champions Newsfeed with recent stories and news from around Mayo Clinic. Search for your condition or other healthstron topics, and share these stories on your social media networks. The news feed also populates text that you can use for your post if you’d like.

It’s helpful to start off commenting on what others post. Add in what your experience has been and how you feel about it. Replying to others' posts builds connections to those who have the same condition or interests as you.


Start Sharing

Reaching others digitally is an easy way to reach others beyond the constraint of location and a quick way to help others when you have time. Start sharing, and spread trusted health information and hope to those you care about. And reach those who are looking for answers in their health care journey.

My husband was diagnosed with pulmonary fibrosis. Would like to hear from people with this disease

@christelle

My husband was diagnosed with pulmonary fibrosis. Would like to hear from people with this disease

Jump to this post

Hello @christelle,
Thank you for posting. A new diagnosis can certainly leave you and your husband searching for answers. Connect does have some conversations around pulmonary fibrosis if you'd like to join in: https://connect.mayoclinic.org/search/?search=pulmonary+fibrosis&facet_type%5B%5D=group&facet_type%5B%5D=discussion&facet_type%5B%5D=webinar&hub_data_process=&hub_mvc_submitted_form=true&action=wp_handle_upload

If you're looking for more information from Mayo Clinic about pulmonary fibrosis, visit our website at: https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695?mc_id=global&utm_source=connect&utm_medium=l&utm_content=blogchampions&utm_campaign=&geo=global&placementsite=enterprise&cauid=102815

@christelle

My husband was diagnosed with pulmonary fibrosis. Would like to hear from people with this disease

Jump to this post

Hi @christelle, welcome to Connect. You will find many members talking about pulmonary fibrosis in the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/

I invite you to introduce yourself in this discussion and I'll be sure to connect you with others caring for family members who have PF:
– Pulmonary Fibrosis* https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/

Please login or register to post a reply.

Invite Others

Send an email to invite people you know to join the Mayo Clinic Champions page.

We'll include this text in the user's invitation.