How one online community changes how people feel about their health

The internet has probably affected how you think about your health. Maybe it's helped you understand something a doctor has told you. Maybe it's made you feel more anxious about health information. But did you know it can connect you with other people who have similar health challenges?

No matter the diagnosis, you can find people online who are talking about it, sharing tips and building community.

At Mayo Clinic, that online community is called Mayo Clinic Connect. Connect brings together people from all over the world to share their knowledge and experiences — whether or not they are Mayo patients. Members discuss challenges and successes, and ask questions of people living with similar health conditions. All you need to join in: an internet connection.

Here's what members of Mayo Clinic Connect say they've gained:

Practical tips

Struggling with a diet plan for your heart condition? Get inspiration from other people's recipe books — and their persistence in finding healthy new foods. Need advice on traveling with your ostomy? Start a discussion and learn how others do it.

You can pay it forward by sharing your own tips, too.

Relief from feeling alone

No matter your circumstances, feeling lonely with your condition is normal. Online communities are full of people sharing their stories, sending each other strength and good thoughts, and even planning to meet in person.

One woman who uses Mayo Clinic Connect rejoiced at finding others who have scoliosis. Knowing no one else with the condition, she said her online conversations were not just helpful, but uplifting.

More good news: If you're not ready to share publicly, you can post your questions or your story anonymously.

Courage

You might be afraid of going into surgery. Or nervous about asking your doctor questions about treatment. Or afraid of the ways your diagnosis might limit you. You're not alone in those fears.

Online community can connect you with people who are facing their fears and moving toward their goals, big and small, whatever their health status. And that can give you some extra hope and strength when you need it.

A sense of purpose

On Mayo Clinic Connect, some members become valuable mentors. These volunteers connect people with similar experiences and provide a listening ear. Mentors find big rewards in giving back and helping others feel empowered in their health. Try it out, and add your voice to a welcoming, respectful and safe online community.

So, is there a catch?

Before jumping in, it's good to know about the pitfalls to avoid:

  1. Bad advice. Many online communities are open to everyone. That's good for people seeking help, but it means members have to take care. Mayo Clinic Connect moderators look out for faulty health info. But be careful of anyone promising a miracle cure or trying to sell a product.
  2. Emotional burnout. Hearing other people's stories can be empowering, but it can also be overwhelming. Take breaks when you need to, and remember that you can't help every person who needs it.
  3. Cutting out the doctor. Online community can't take the place of a health care team. Big decisions about treatment are between you and your doctor.

But the connections you make online can help you live better and give you new knowledge and power over your health. Wherever you are in your health journey, there is community waiting for you.

  1. Nath C, et al. Website sharing in online health communities: A descriptive analysis. Journal of Medical Internet Research. 2016;18:e11.
  2. Solberg LB. The benefits of online communities. AMA Journal of Ethics. https://journalofethics.ama-assn.org/article/benefits-online-health-communities/2014-04. Accessed Nov. 12, 2018.
  3. 6 tip-offs to rip-offs: Don't fall for health fraud scams. U.S. Food and Drug Administration. https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm341344.htm. Accessed Nov. 12, 2018.
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