Young, busy, outgoing, Amy Ohm didn’t feel ready to share her devastating cancer diagnosis with the world. She was hardly ready for the news herself and had no desire to be the next hot topic of family, friends, friends of friends or even strangers. Even if they meant well, she didn’t have the wherewithal to handle the awkwardness of someone trying to relate to the unrelatable, on top of trying to digest the information for herself.
First, she searched the Internet for information she could relate to and came up with mostly clinical insight. But what she really wanted was to find others who were going through similar experiences and feelings, so they could vent, share, and feel better through meaningful exchanges of treatment insight and support.
As she searched, it became clear to her that others were looking for the same thing. Her heart went out to the scattered connections she achieved, and she soon came to realize that many people with incurable chronic illnesses had secondary conditions as well, such as anxiety or depression.
“Many of those living with illness feel alone and misunderstood, some are disabled and all are in need of support. Chronic illnesses can be invisible, causing confusion amongst friends and family members. Connecting with those who can relate and provide support based upon personal experience is giving social networking purpose,” explained Ohm. And so began the journey to create such a space where, “Having privacy and anonymity can make it an even richer and more valuable experience.” TreatmentDiaries was born—an anonymous resource for patients and caregivers alike.
1. What makes TreatmentDiaries unique among other forums?
TreatmentDiaries facilitates a digital connection centered on health between people who don’t know each other physically or by name, but who share experiences with any and all medical conditions. This means people are connecting with others who truly relate to their personal and difficult journeys, all anonymously.
It’s a different kind of social to be unknown as a person, but rather through your illness – today this type of experience is unique to TreatmentDiaries.com. We provide a forum for crucial exchanges of information between actual people coping with or car¬ing for anyone with a chronic illness, mental health condition, rare disease, life changing experience, or any combination thereof. It fills the needs of those learning to cope with a condition that will never go away and feel as if they’ve been given the “blind eye” by those with whom they’ve been historically close. It’s a way to build a new community around the patient that understands their trials and becomes a source of inspiration for all participants.
Users can vent about doctors whose clinical approaches lack compassion, friends and family members who’ve “disappeared” because they’ve grown weary of dancing around the topic of chronic illness, and they can connect with others who are going through similar real life scenarios to create an online family that meets their daily needs for encouragement, treatment insights, and support.
2. How do you think this emphasis on anonymity impacts members who post on TreatmentDiaries?
Anonymity extends the freedom to be completely open with your concerns, fears and interests without the worry of being overexposed via traditional social media channels. Living with illness(es) and providing care for loved ones can be incredibly isolating. People feel better when they can share privately and especially when they share with those who can relate. Family and friends have good intentions, but they lack understanding and experience for those on a journey with illness. Too often this physical circle wears thin and sometimes even vanishes. Social connections with anonymity have long lasting qualities. You don’t have to “know” someone physically to understand and relate to what you share by way of an intimate experience with illness.
TreatmentDiaries is truly a different kind of social networking. One user shared this in their diary, “Being non-judgmental and anonymous is very healing. So many people are here to uplift you and maybe give some advice, but definitely lots of love and caring. In my own life, my family is always trying to FIX things, when all I (we) want sometimes is just someone to listen…..”
3. How do you ensure the anonymity of your members?
Users choose a screen name which acts as an alias and an alternative to a first and last name scenario. All personally identifiable information required at sign up is kept private, unless they choose to make it public, such as zip code, city and email address.
4. You host twitter chats every Tuesday. Do social media platforms such as Facebook or Twitter further your mission?
We use social media to bring added value to our mission. First, we want those who share in our conversations publically to have a private place like TD to connect and acquire the insight and information to live well despite illness. Social media platforms give us an audience and a conversation to promote our mission. We also attract partners through social media and leverage our weekly #treatdiarieschat’s as a way to spotlight great resources for navigating a particular illness.
5. What kind of content do you share on the TreatmentDiaries Blog?
The TreatmentDiariesBlog.com is for sharing personal perspectives, experiences and general insight into particular resources and illnesses. We offer it up as a platform for partners to guest post the details of their advocacy efforts and knowledge. It plays well within our mission of connecting people to actual experience.
6. What’s your community vision?
TreatmentDiaries.com is dedicated to the needs of all types of users including: individual patients, caregivers, family members, and advocates. We advocate the importance of keeping a diary of life changing experiences and the significance of engaging in behaviors and activities which promote health, mental wellness, and the self-management of all medical conditions. It is our vision to grow our reach to support the 100’s of millions in need of information and support from those who share their journey. We want people to make authentic, quality, lifelong and, if they wish, continually anonymous connections, and inspire others to live life to the fullest, no matter what their condition. Your Diary…Shared Healing.
7. What do you find most exciting about the direction that health, social media, and patient empowerment are going?
Social media is quickly empowering patients to be closer to the nucleus of their own care. Health related searches continue to be the most popular topic on the internet and patients are looking for more non-clinical specifics about their particular ailments, treatments, symptoms, diagnoses, what they might or should expect, and so on and on. What isn’t needed is more strict information. The internet is peppered with clinical slants protected with litigious disclaimers. For those who want the truth, it’s best captured in the personal stories of actual patients, living with actual health related challenges.
Finding those who share your experience and who are willing to share is what social media enables. Having an opportunity to be private with what you share and who you share it with is what sets TreatmentDiaries apart.