Six years ago, the last time I had the opportunity to measure it, a Pew Research survey found that about two in ten U.S. adults have gone online to find people who might have health concerns similar to theirs.
Now, in a report we published on July 31, a Hopelab/Well Being Trust survey of 14- to 22-year-olds finds that FOUR in ten (39%) young people say they have gone online to try to find people with health conditions similar to their own. And they have been wildly successful: 84% say they were able to find a health peer online.
This translates to one in three young people in the U.S. who found health peers online and, of those, 91% say their last experience with an online peer was helpful: 20% say it was “very” helpful and 71% say “somewhat.”
Sorry, was I shouting?
The implications for this finding are huge. It means that when someone in that age group is diagnosed with something scary and new, one-third of them already know that they can connect online to a peer, who can talk them down from that ledge. It means they can give this crucial tip — “find a just-in-time someone-like-you” — to their friends and family members who are facing health crises. And it means there is a market for all the platforms and services that help connect people.
I’m also excited to have data about how young people are going about the search for peer health advice: visiting online health forums (the most popular choice), using social media, reading blogs, or posting a question or comment (such as on YouTube).
Of those who have not looked online for a health peer, 55% say they haven’t had any serious health issues; 36% say they would rather talk to people in person; 33% say they prefer to rely on advice from health providers; 25% say they do not trust online advice from people they don’t know. One in ten (9%) say that they don’t know how to find people with similar health concerns and just 3% say that people they meet online are too different from themselves. (This all adds to more than 100% because respondents could choose more than one answer.)
Plus, when we asked the peer health advice questions in a different way, we found:
- 61% of teens and young adults say they read or watched other people share about their health experiences online.
- 15% of young people say they have shared their own personal health experience online.
We broke down these findings along the following lines:
- More than two-thirds (69%) of young adults (18-22 year-olds) say they have watched or read something online about other people’s health experiences, compared to 52% of teens (14-17 year-olds).
- Half (51%) of young adults say they have tried to find people online with health concerns similar to their own, compared to 25% of teens.
- Two-thirds (67%) of females say they have watched or read someone else’s health story online, compared to 55% of males.
- Forty-four percent of females say they have tried to find people online with health concerns similar to their own, compared to 33% of males.
- Eighty-one percent of LGBTQ people in this age group say they have watched or read other people’s health stories online, compared to 57% of cisgender/straight youth.
- More than one in four (28%) LGBTQ young people report having shared their own health stories online, compared to 13% of their cisgender/straight peers.
- There are no statistically significant differences among White, Black, or Latino youth in this sample in the percent that say they have ever gone online for health information, used health-related mobile apps, watched or read other people’s personal health stories online, or gone online to find people with health concerns similar to their own.
And now for the best part: Story time!
We asked people to give us an example of a time they went online to try to find other people with health concerns similar to theirs. What was the situation? How did it turn out?
A small sample of their answers:
I have type 1 diabetes and tried to find a group of teenager type 1’s on Facebook. I did. It was cool. Made some friends. – 14-year-old White male
I found a very good friend in another country that had the same condition as I did, and it was truly inspiring to have the freedom to tell them about it and likewise them to me! – 21-year-old Latino male
Heart disease research when my grandpa had to put stents in, found out what it was all about via searching Google. Felt very confident in the procedure once I read other people’s experiences with it. – 16-year-old White female
I wanted to know something about birth control and people had the same questions and it helped me know that I wasn’t alone. – 21-year-old Latina female
My mom was making me get the hepatitis A vaccine and [another] one for HPV and I didn’t know what the shots were for, and I was too scared to ask the nurse about it, especially after she started talking about gay sex & warts, so I went online to [a medical website] and tried to research it myself. It’s still hard to do that when you don’t what the words mean. I finally asked my mom & she sat down with me, and we got online and did the pros & cons. I felt better after cause she was explaining what I didn’t understand. – 14-year-old White female
I asked about the electric cigarettes to quit smoking; a lot of people had something to say but I asked if the gum or those cigarettes are addicting. Because my friend can’t seem to stop using them. – 17-year-old Latino male
I had a family member who has skin cancer and I was wondering about treatments and effects of skin cancer. I ended up finding lots of info that proved to be helpful and ease my worries. – 14-year-old White male
I went on a chat forum for people with eating disorders. I made a friend that I keep in touch with. We talk about what we have been eating recently and how we have felt about our situation. – 15-year-old female
I shared my experience with IBS [irritable bowel syndrome] on Facebook and gave tips [for] major flair ups. – 22-year-old female
Three years ago, as a female my body started to have irregularities and [I] thought it was only me until I searched online for other women who had the same concerns. Turns out I have Polycystic Ovary Syndrome and [it] is treatable. – 19-year-old Latina female
I read someone’s [story of their]… recovery [from] trichotillomania [pulling out one’s hair] and found it inspiring and relieving that I wasn’t the only person experiencing this compulsion since childhood. – 20-year-old female
I shared my scoliosis journey and spinal surgery and updates on post-surgery recovery. – 20-year-old White female
I have watched several people detail their fitness routines and how they used it to beat mental health disorders such as body dysmorphia and those affected by obesity and food addiction. – 22-year-old Black male
I’ve watched several videos that are first person accounts of coping with depression and anxiety. I can’t give specifics, because there were a few separate instances and all were not very memorable. It was about finding a sense of ‘I’m not the only one’, not about finding out about a specific person’s struggle. – 22-year-old White female
I’ve had POTS [Postural Orthostatic Tachycardia Syndrome]since I was 16, it made me pass out 1 to 5 times a day. I looked online to see how other people dealt with it. I found one lady who’s POTS is so bad she’s been pronounced dead 37 times because her [heart] stops when she has a dizzy spell. – 21-year-old female *(Note: POTS does not cause someone’s heart to stop – more information below)
I watched videos of people talking about their family member’s eating disorders, because my roommate had one and I didn’t know how to support her. – 21-year-old White female
I had been having a really rough week. My depression had been really bad and I was feeling really stressed and anxious about school. I posted on Instagram about my struggles with my classes and how I was feeling, and I was met with lots of encouraging words. Someone even direct messaged me and told me they were going through a similar situation. It really helped me pick myself up. – 17-year-old White female
I had recently received information about my health regarding a personal condition. I was scared, and I researched online to find others with this condition. – 22-year-old Black female
I told others how I experienced depression. How it developed, what it did to me and how it affected those around me. I also told of what helped me cope and get through it in the end. The other people either congratulated me or asked me for advice on the topic. – 22-year-old White male
Watched videos of abuse survivors to feel less alone. It helped validate my experience and what I went through. Made me not feel as alone and motivated me to really improve my own situation. – 20-year-old Latina female
I actually responded on a Reddit thread to add to a conversation debating whether people trivializing mental illnesses by comparing them to habits/quirks and feelings it’s possible to feel without actually being mentally ill is damaging. (Example: being anxious about a big test vs. actually having anxiety and dealing with it on a daily basis because of your brain). – 20-year-old Latina female
The situation was similar to mine. I watched YouTube videos about people also going through situational stress and anxiety, particularly others experiencing the same thing I was – trying to juggle work and school and be successful at both of them. – 22-year-old male
Read the full report on the Hopelab site: Digital Health Practices, Social Media Use, and Mental Well-Being Among Teens and Young Adults in the U.S., by Victoria Rideout, M.A. and Susannah Fox
Watch the video produced by Reframe Health:
For more examples and research, please see my Wakelet collection: Peer to Peer Health Advice.
And, as always, please tell me what you think in the comments below.
* To reassure readers who may be alarmed by the quote above, the viral video that is likely being cited shows a woman with multiple conditions — it is not POTS that causes her heart to stop. Here’s an excerpt from the National Institutes of Health Genetic and Rare Diseases Information Center: “Postural orthostatic tachycardia syndrome (POTS) is a condition characterized by too little blood returning to the heart when moving from a lying down to a standing up position (orthostatic intolerance). Orthostatic Intolerance causes lightheadedness or fainting that can be eased by lying back down. In people with POTS, these symptoms are also accompanied by a rapid increase in heart rate.”
Photo credit: Meghan Fox
Sonia Cohen says
My company, First Children Services, works with youth with mental health challenges and I thought this would be an interested article for our clients and social media followers. I would like to know if I can get permission to share this article on my company’s social media page. I appreciate your consideration.
Susannah Fox says
Thanks! I will send you an email.
Susannah Fox says
Dave deBronkart maintains a starter list of patient communities in case anyone is curious to see examples of what’s available when it comes to peer health advice.
I’m a 25 years old girl, I am Italian and I have cystic fibrosis. I am about to finish university and i’m Writing my graduate thesis about how social media can help people with chronic disease like me, in sharing feelings, experiences and hopes. I believe your researches are very helpful for me; I would like to discover more about it.