Are Social Networks A Safe Haven For People With Disorders To Get The Support They Need?

“My hope in joining TD is to find others struggling with the physical and emotional challenges of disorders, people who understand the irrational places your head can take you.  I’ve already found a lot of inspiration here and hope there’s a lot more to come and that I can pay it forward.”
TreatmentDiaries.com user

Health and Social Networking

During the last five years, social networking has exploded in popularity and has quickly become a global phenomenon. This technology revolution has changed the way people share, communicate, and strengthen human relationships online. While social networks such as Facebook and LinkedIn have proven themselves to be great platforms for sharing personal information with others, the very openness they depend on has prevented them from being effective tools for health-related sharing and support. This is because the two key requirements for publicly sharing health data – privacy and anonymity – are generally suppressed in traditional social networking forums.

disordersNow, a new type of social network is emerging – the health-related “support network”. Health-related support networks depend on selective privacy and assured anonymity in order to foster the open and honest dialogue needed to benefit their users. Additionally, individuals who want to share their disorders and experiences often have complex profiles. For example, a participant in this type of “support network” might be a sufferer, caregiver, or both; and that individual may be battling a number of related or un-related disorders. In many cases physical ailments lead to mental disorders such as depression or anxiety. According to the Kim Foundation, almost one in four American adults suffers from mental disorders.

Besides conditions such as Schizophrenia, Alzheimer’s, and Autism, mental disorders include more common conditions such as anxiety, panic attacks, and mood disorders. Further, almost half of sufferers actually struggle with two or more disorders. These users need a safe haven where they can connect on a myriad of issues and concerns, where they can share in their triumphs with others, and where they will no longer feel isolated in their journey with disorders. The complexities of managing multiple disorders, both physical and mental, make a compelling case for the growth of specialized health-related support networks.

The Need for Privacy

Those individuals who are brave enough to participate in online communities and share intimate details of their personal challenges with disorders – whether physical or mental health related – assume risks. This is because most social networking forums, like Facebook and Google+, and even most health-related social networks, have adopted business models that leverage personal data to increase profits. These sites utilize business models that rely on aggregating user data and selling that data to third parties. Time and again, these models have run afoul of privacy-minded groups and individuals.

These social networking sites, which rely on limiting privacy and anonymity, cannot effectively address the challenges posed by people seeking support for health-related disorders. For instance – where does one go to communicate and bond with others living with disorders such as depression, OCD, anxiety, or bipolar disorders? While it’s likely that many of these other individuals are all on Facebook, it is a very “unsafe” forum to share personal details of these disorders because of the potential impact these details could have in other areas of a person’s life. For instance, many employers look to social networking sites like Facebook and LinkedIn when screening employees and possible hires and often make decisions based upon the photos, posts, and groups people belong to.  So, a person with any kind of disorder who is looking for support on Facebook can be affected in a negative manner; health-related discrimination is not uncommon in employment, housing, and other areas.

TreatmentDiaries.com – A Better Path

In order to develop a strong community, a health-related social networking site must gain and keep the trust of its users. This can only be done by making a firm commitment to the privacy of each and every member of the community, and allowing each user to dictate exactly what should or should not be shared, and with whom those details should be shared. In order to foster tightly knit support communities, a social network must:

  1. Guarantee anonymity for all its users;
  2. Allow end users to manage privacy with ease;
  3. Make a commitment not to sell any private data.

These self-organized communities of trusted individuals are people who may never meet in real-life but who are bonded by their shared experiences with different disorders. While a support network is not a forum for formal medical advice, the communities that form encourage a number of behaviors that can benefit participants; from increased knowledge and awareness about specific treatments, symptoms, and disorders, to the real hope that springs from constant positive reinforcement and empathy. This leads to a concept known as “shared healing”.

“Thank you for letting me talk in words that I have a hard time saying out loud.”

TreatmentDiaries.com user

TreatmentDiaries.com believes that anonymity and privacy are the absolute cornerstones to delivering a shared healing experience predicated primarily on improving the mental health and well being of its users, not profits and losses. Unlike other social networking sites, TreatmentDiaries.com recognizes that the growth potential of user communities can only be maximized if those users are comfortable in their knowledge that they control exactly what can be shared and with whom. And only when communities grow through assured privacy and anonymity do they become safe havens for sufferers and caregivers alike.

“It’s nice to be able to vent to others who understand your situation, because sometimes you don’t want to wear out your family and friends with never feeling well,” said Janet Palutke, a hospital administrative director who uses the site and recommends it to her patients at Valley Health Winchester Medical Center.

Real People. Real Information. Actual Treatment Insight.

On TreatmentDiaries.com, members can think through and share all that concerns them and automatically be connected to those who are travelling a similar journey. Through a true support network environment such as TreatmentDiaries.com, the management of disorders can shift from a daunting and frightening ordeal to a journey of shared healing. Besides delivering emotional support, TreatmentDiaries.com provides tangible benefits to its users through shared knowledge. Support is found in the knowledge of how others are being treated for disorders and how they are responding to their treatment.  This increased awareness results in more informed conversations between patients and medical providers and a feeling of empowerment in mapping out a treatment strategy.

About TreatmentDiaries.com

Treatment Diaries Inc. (www.TreatmentDiaries.com) is a unique social network, providing REAL information exchange between people coping with or caring for anyone with disorders, mental health conditions, or rare diseases. This virtual support is free and always available; site offers a safe place to keep diaries anonymously of daily life journeys, across multiple conditions – either privately or shared with others, enabling the exchange of treatment insight, mutual support, and encouragement.

For more information and to register for TreatmentDiaries.com please visit our website at www.TreatmentDiaries.com

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