By Guest Blogger Wayne Connell, Founder and President, Invisible Disabilities Association (IDA)
Yes, I’m one of the 72 percent of online adults who visit Facebook at least once a month. Actually, I check my Facebook multiple times a day. There were more than 1.4 billion active Facebook users worldwide as of January 28 and more than 890 million use it daily. And of course I use Twitter too, along with the 288 million other users sending 500 million tweets a day, according to Twitter’s statistics page.
I founded the Invisible Disabilities® Association in 1996 and we launched our first website in 1997. The Internet, or World Wide Web, was just getting started. Yet we had twenty- to twenty-five thousand people a month visit our site. Why so many? I believe that people living with illness and pain were trapped in their homes and the Internet became a window to the world for them.
In 1999, we launched our first online community on Yahoo groups and the Invisible Disabilities® Community (IDC) was born. IDC became a place to share the triumphs and tragedies of life with people who were on similar journeys. In 2007, we moved the community to the Ning platform, which was like a private MySpace. The community grew to more than 4,500 during the next seven years.
“I joined [the IDA Social Network] soon after I had to quit work and it saved my life. To this day (over 5 years later) I still maintain friendships that span the country (no, the world). It is a website that values your feelings and your privacy.” – Jane
In 2014, we moved the Invisible Disabilities® Community to Facebook and Google+; between the two groups, IDC grew to almost 9,000 members. We soon learned that Facebook and Google+ did not have the capabilities of the old Ning platform and the groups became more of a free-for-all. We needed a platform with the ability to have skilled moderation, a solid track record of management and a breadth of services and offerings. We found it on the Inspire platform.
The Inspire platform will allow the Invisible Disabilities® Association Community’s members to have access to over 200 support communities, more than 80 trusted partners like IDA and access to over 580,000 members! Since the launch on February 19, the Invisible Disabilities® Association Community (IDAC) has grown to almost 800 members. The IDAC can be reached at either http://invisibledisabilities.inspire.com or http://invisibledisabilitiescommunity.org.
Yet the question still remains, is social media a good place to connect and build relationships? Over the years, we believe that the answer can be a resounding yes. We see posts daily such as the one previously mentioned above, that the IDAC was a life-saver, a place to no longer feel alone.
Many understand the value of support groups. The Mayo Clinic, under their Healthy Lifestyle and Stress Management blog, sheds the following light on support groups:
Regardless of format, in a support group, you’ll find people with problems similar to yours. Members of a support group typically share their personal experiences and offer one another emotional comfort and moral support. They may also offer practical advice and tips to help you cope with your situation.
Benefits of participating in support groups may include:
- Feeling less lonely, isolated or judged
- Gaining a sense of empowerment and control
- Improving your coping skills and sense of adjustment
- Talking openly and honestly about your feelings
- Reducing distress, depression or anxiety
- Developing a clearer understanding of what to expect with your situation
- Getting practical advice or information about treatment options
- Comparing notes about resources, such as doctors and alternative options
Support groups are a key component to being able to navigate a journey with illness and pain as noted above. There are many great in-person support groups, yet because their energy levels are measured hour by hour, many with invisible disabilities cannot attend in person at a specific time and place. The value of an online support group is that they can attend whenever they have the energy to go online.
The Emotional Life PBS.org blog shares about how close relationships, which I believe are built through online communities, help with happiness:
Belonging to a group or community gives us a sense of identity. It helps us understand who we are and feel part of something larger than ourselves. Researchers also find that people with strong social connections have less stress-related health problems, lower risk of mental illness, and faster recovery from trauma or illness. Friends and family can also encourage and support us in healthy lifestyle habits, such as exercise and moderation.
Researchers have found that people are happier when they are with other people than when they are alone—and the “boost” is the same for introverts and extroverts. They also are finding that happy people are more pleasant, helpful, and sociable. So being around people makes us feel happier, and when we are happier we are more fun to be around, creating an “upward spiral” of happiness.
Even celebrities such as Avril Lavigne are impacted by the value of an online community. According to US Magazine:
In December , Lavigne began to field questions from fans as to her whereabouts. A fan Twitter account under the handle of @AvrilMusicChart posted a screenshot of direct messages with Lavigne, in which she spoke about her health issues.
“I feel bad because I haven’t been able to say anything to fans to let them [know] why I’ve been absent,” she reportedly said at the time. “I’m torn as I’m quite private… I’m not feeling well. I’m having some health issues. So please keep me in your prayers.”
While she chose not to give any further information on her mysterious illness, Lavigne did tweet to her supporters that week, “Thank you to all the fans for the sweet get well messages and all the tweets. I appreciate the lovely notes and well wishes from everyone.”
CNN reported that the Canadian singer has revealed to People magazine that she was bedridden for five months after contracting Lyme disease.
“I felt like I couldn’t breathe, I couldn’t talk, and I couldn’t move,” she told the magazine. “I thought I was dying.”
The 30-year-old performer said she recuperated in her Ontario home, where her husband would use tour breaks to care for her and her mother moved in to assist.
“There were definitely times I couldn’t shower for a full week because I could barely stand,” she told People. “It felt like having all your life sucked out of you.”
After her direct message about her health went viral, Lavigne was inundated with concern from fans.
“The get-well messages and videos they sent touched me so deeply,” she said.
The power of social media to be used for good is noted in the reactions of Lavigne’s community of fans. They spread her story across the Internet and the request for prayers. She responded with kind words and gratitude.
Noted in my blog, The Loneliness of Illness and Pain:
As someone who has been a caregiver for almost 20 years, I can understand and relate to that isolation and loneliness. My wife, Sherri, and I hardly ever have guests visit our home and the phone rarely rings, except for calls from telemarketers. We understand firsthand how people’s perceptions and misunderstandings regarding illness and pain many times cause them to stop connecting with those they are closest to.
At IDA, our mission is to encourage, educate and connect people and organizations touched by illness, pain and disability. We will continue to provide ways to connect in community for people who feel isolated and alone due to their illness. Join us at the Invisible Disabilities® Association Community on Inspire today. Find new friends, people who are on similar journeys who truly understand illness and pain. Be part of a loving group who find happiness despite the difficulties because people caring for each other really does matter. Be believed does help relieve the stress. I hope you are now inspired to connection. Let’s all envision a world where people living with illness, pain and disability will be Invisible No More®.
About the Guest Blogger
Wayne Connell, the founder and president of the Invisible Disabilities® Association, established IDA in 1996 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the book, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities.
Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member of InvisibleDisabilities.Inspire.com.
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