In everyday life, people with chronic pain may find it difficult to connect with others facing similar experiences. Fortunately, the emergence of social media networks specifically geared toward people living with chronic disorders aims to help patients dissolve those barriers, finding support and camaraderie in the process.
Social support helps those living with a chronic disease feel like they’re part of a community and fosters emotional health.
Patients with chronic pain who look to online groups for social support say the networks help them feel less alone. For those patients whose conditions keep them largely housebound, the social benefits of connecting online are vast. Erin Kotecki Vest, a former broadcast journalist who was forced to stop working after a lupus diagnosis, tells Boston’s NPR affiliate:
“My immune system is so low that picking up my children at school is a danger…so I keep my sanity with Facebook and Twitter and Instagram and blogs and Pinterest and wherever else we [the online community] can all get together.”
Here are a few social media networks and groups that are connecting patients with chronic diseases.
1. MyCounterPane for MS
This social network right now connects people with multiple sclerosis, but will soon expand to foster connections for those living with other conditions. Users can share content through voice recordings, journal-style writing, or images, and connect with others doing the same. Content is searchable by emotion, and so if you’re feeling, for example overwhelmed, you could click on that word and find content posted by people expressing related feelings.
A Phoenix woman named Kate Milliken started the network after an MS diagnosis upturned her life in 2006. She was a video producer who created a series of videos to document her experience and shared them online. The response was tremendous, particularly among the MS community, and Milliken decided to create a new social platform to allow others to connect through sharing vulnerabilities.
MyCounterPane is password protected, which means only registered users can see the content. Additionally, when people upload, they have the option of keeping their chronicle private or sharing with the community.
2. GrowingPains for teens
This site was created for children by the American Chronic Pain Association (ACPA), and is intended to help young pain patients connect through shared experiences. It also functions like a support group, ACPA says. Like MyCounterPane, the site is private and uploaded content is accessible only to those who register, making it a safe place for children to truly express themselves.
Members can upload a variety of content that ranges from journal entries to pictures, and they may keep it private or share with the community. Users can also email each other or send traditional letters through the post office.
By participating on the forum, children develop self-awareness and find comfort in knowing that they are not alone, ACPA says, adding:
“As a teenager, it is essential to love yourself and be proud of who you are.”
Although chronic pain is frequently thought of as a problem that affects adults, many younger people live with disorders resulting in ongoing pain.
3. Instapeer for cancer patients
This social networking site is geared toward young adults living with or affected by cancer. With 800,000 cancer survivors under 40 in the U.S., the network aims to end isolation by connecting survivors, patients, and caregivers grappling with related life issues and concerns.
The network is self-contained as an app, like Twitter or Instagram, but for young adults with cancer. It’s unique in that it provides one-on-one support—each person is matched with a peer who can offer specific advice and an empathetic ear. Although the app is generally private, some information is collected to match people together and also for research purposes.
Researchers are hopeful that users connecting on the platform will feel better and learn new coping strategies. To quantify the benefits, a team of scientists from leading institutions like Duke University and University of California, Los Angeles is studying the data.
The platform was developed by StupidCancer, a non-profit created by brain cancer survivor Matthew Zachary, who was diagnosed at age 21.
4. Cure Together for chronic pain
While many other social media apps for chronic pain are designed around sharing emotional experiences, Cure Together harnesses the collective wisdom of the community by sharing medical information.
Chronic pain patients rate, and can read others’ ratings, of treatments varying from sleep to dietary changes to Tylenol. User-collected information helps, for example, arthritis patients to see what remedies have helped others, with joint replacement and chiropractic care among the most helpful treatments.
Research discoveries are even made through analyzing the data. The medical community is hopeful the platform could have helpful implications for treatments. The New York Times says:
“In a world where serious side effects often emerge only years after a new medication enters the market, such real-time information from real-world patients may also provide an early warning signal for drug safety problems.”
There are privacy concerns, the Times notes. Cure Together has sometimes generated revenue by emailing targeted patients advertisements from pharmaceutical companies, although users register anonymously and there isn’t a fee associated with joining.
5. Invisible Disabilities Community (IDC) for chronic pain
This non-profit organization serves people with so-called invisible disabilities, such as chronic pain and fibromyalgia—disorders that impact people’s lives, but aren’t obvious to outsiders.
The organization’s initiatives include offering educational resources and support to people suffering from these conditions. Instead of offering specific information related to individual conditions, IDC supplies general information to help those suffering from invisible diseases.
For example, available resources include the pamphlet called, “But You Look Good,” in addition to IDC’s social network, Inspire. On the network, which is completely private and password protected, users may post journal entries, meet others experiencing similar health problems, and start discussions.
Have you ever connected with other chronic pain patients through a social media network?
Image by KimSanDiego via Flickr