There 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.
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.