Y O U A R E N O T A L O N E
W E A R E O N E A N D T H E S A M E
‘The moth prefers the moon and detests the sun, while the butterfly loves the sun and hides from the moon. Every living being and creature responds to light. But depending on the amount of light you have inside, determines which lamp in the sky your heart will swoon.’ – THE WRITINGS OF SUZY KASSEM
Hello there! YOU are heartily welcome to YOUpersonify, a diversified universal community of medical, health and wellness safe spaces for people suffering from or going through the same disease, disorder or condition for genuine peer connections and interactions, rooted in love, reciprocated energy, friendship, holistic support and empowerment.
Conventional thinking is that one’s health and wellness information is private and should be kept confined to a tight circle of family, friends and health care providers. We are passionately advocating that people open-mindedly share their experiences and health realities to firstly and most importantly, holistically nourish themselves, and in that evolution and elevation, assist and guide others in a similar, better or worse phase or situation. The resulting exchange, process and growth translates in the global health village enlightenment and our local communities getting a comprehensive overview and broader in depth perspective of the real-world nature of disease, so as to constantly and continuously discover and implement reasonable, practical, economical and actionable health solutions and remedies that are nature friendly.
For example, YOU are diagnosed with prostate cancer. On YOUpersonify, YOU will network with members who have gone through or have been living with the disease for a day, a month, a year or more. YOU are FREE to interact and share your soul truth, which you would otherwise feel uncomfortable or find particularly hard doing on other social media platforms due to visibility, fear or stigma. Thoughts like, ‘What is it like after 22 days?’ ‘What will I be able to do and not do?’ ‘What is the scariest part of the disease?’ YOU will be able to ask the number one question people with disease have, ‘Given my diagnosis, what’s the best outcome I can hope for and how can I get there?’
Members connect and share their experiences with a particular medication, therapy or alternative form of treatment. Common but vital inquiries like: How long have they been on the drug; What have the side effects been; Do they feel the treatment has been effective; and so forth. This is knowledge patients who have just been prescribed the same drug are anxious to comprehend. Let’s consider an ailing community member who may share on a forum, ‘When I first started taking *DrugX*, it made me sleepy, but over time my body adjusted and I no longer have that side effect.’ So if YOU’ve also just been suggested for the same prescription, YOU can anonymously or publicly post and give your honest feedback on the fellow user’s introspection or send him or her a message and query, ‘How sleepy did you get? Was it so bad you couldn’t go to work? How long did it take before your body adjusted?’ He or she would then respond and satisfy your curiosity. As a result of this exchange, YOU and the new acquaintance and real friend may start to regularly correspond, and in that spirit and purity of synergy, YOU may both become each other’s holistic support system and source of advice and information.
Chandra Story is a master certified health education specialist and a professor of health education and promotion. She has worked as a grant project coordinator, public health information officer and community health educator. Story’s research focus is the evaluation of health promotion interventions in order to decrease disparities. Her evaluation portfolio includes physical activity, mental health and HIV/AIDS advocacy programs. Here, she is talking about the importance of social support and wellness at the 2015 TEDxOStateU event, April 10, 2015, at the Oklahoma State University campus.
Another example is menstruation. It has serious physical and psychological consequences, particularly for girls and women in low resource settings. If YOU’re a girl from a low or middle-income background, your period can keep YOU out of school, lead YOU to losing your job or even make YOU a target of sexual violence. In some places, cultural taboos and stigma force girls to sleep or eat away from their families and abstain from social gatherings during menstruation. That kind of isolation and shame can profoundly stunt and affect girls’ psychological and social development. General unease around the topic of periods is preventing it from being approached and holistically worked out by the general population and health community.
Below is a very well thought out and written article on patient advocacy by Kevin Hwang, MD, MPH, on the benefits of online health communities for patients and caregivers, virtual support for health concerns, as published on www.verywellhealth.com. Holistically Insightful!
Online health communities (OHCs) exist for all varieties of chronic diseases and health issues, from cancer-themed groups to simple calorie count forums. Members interact via forums, blogs, chats and other forms of messaging. Some OHCs are stand-alone communities, while others are integrated into social networking or other websites. While OHCs aren’t designed to replace health care providers, they can be a valuable resource for people seeking assistance in dealing with health issues.
Whether you are looking for yourself or for a friend or family member, consider these potential benefits of OHCs described below.
1) Encouragement and Motivation
Dealing with a chronic health condition takes a physical and mental toll. Are you getting frustrated dealing with your chronic back pain? Sometimes you need to hear a gentle, encouraging word from someone who understands your situation. Furthermore, online communities can be a great place to learn new habits. We tend to trust people who are like ourselves more than figures of authority. Studies show that when people exchange information about their medical condition through OHCs, this interaction can in turn improve their disease management. By following the healthy example of an online peer, patients often adopt better “offline” behaviors that have the potential to improve their condition.
2) Advice and Information
If you have a specific question about your diagnosis or treatment, consulting with a trusted health care provider is still recommended.
After diagnosing themselves by searching online, most people still follow up with a medical professional to discuss the issue, according to a report from the Pew Research Center.
However, questions about coping with a health condition might be best answered by fellow patients. For example, what are the best ways to remember to take medications at night?
Or where can you find clothes to wear over an ostomy bag? How can you sleep comfortably with a CPAP mask for sleep apnea? Numerous OHCs are ready to help. Members of OHCs often share how they deal with day-to-day issues from a firsthand perspective.
3) Success Stories
Nothing is more inspiring than hearing about how somebody else has overcome the same challenges that you are facing. It’s even more powerful when that somebody is similar to you. Community members of OHCs frequently review their experiences with different treatment approaches (conventional and alternative). This enables fellow members to not only “observe” what others are attempting but to also “see” the outcomes. Online interactions can be inspirational, leading to the modeling of successful behaviors (as shown in a recent study of arthritis OHCs).
4) Recognition of Success or Positive Events
A pat on the back for a job well done provides positive reinforcement. If you were able to lose 10 pounds in a healthy way, share this with your new online acquaintances. Or if your CT scan came back negative, fellow patients will breathe a sigh of relief with you.
Sometimes it is helpful to be accountable to others for goals and commitments.
For example, if your goal is to walk 20 minutes a day, then checking in with an online partner can keep you on track.
Sharing stories, encouragement and advice with people who have had similar experiences can make you feel like part of a group. You are all going through it together. This is especially valuable if you cannot find peers with the same health condition in your local community.
While face-to-face support groups can be helpful, they are only effective to the extent that you can attend the meetings. A major advantage of OHCs is that you can connect with others anywhere you have Internet access.
You might be embarrassed to discuss certain details with family and friends. In joining an OHC, you can limit the amount of personal information you want to disclose. No one needs to know your real name. Feel free to open up.
Note that although the content you post may be anonymous (not linked to your personal identifying information), it may not be private. In open OHCs, other people can view forum posts without joining the community. Keep this in mind when choosing your username, especially if you have the same username on other social networks.
9) Tangible Support
OHCs are great places for finding out about local “real world” health resources. Members can learn about exercise classes, farmer’s markets, highly recommended physicians or research studies that are recruiting participants.
10) Giving Back
If you’ve enjoyed the benefits of participating in an OHC, then helping other members can be a rewarding experience. Some members remain active on the site primarily to help others.
If you are able to do so, before joining an OHC, peruse the forums to get a sense of how it might fit your needs. Don’t be surprised if most messages are posted by a small group of extremely active members. This one percent rule has been documented in several OHCs.
Also, make sure to follow up with your doctor to verify any conflicting information about your diagnosis and treatment that you encounter on an OHC. Hopefully, you’ll be able to better manage your health with a combination of guidance from your doctor and support from OHCs. Countless peer-to-peer communities exist on the internet; for some examples, learn more about the ways your smartphone is now a medical device.
What differentiates this Health Tribe from other platforms and still adds and exemplifies invaluable experiential community nourishment, is its ambidexterity in giving members the option of alternating between and changing their profile visibility from ‘A Known Public Account’ to ‘Anonymous’ whenever they want to address or contribute to certain topics they hold so dear, or publish content in forums they normally wouldn’t have access to for whatever reason. This simple flexibility emboldens them to be more agile, confident and candid in their exhaustive soul depth expression whenever need arises. Hopefully with this adjustment the culture of gate keeping, duplicity and misrepresentation will be deterred and limited, and instead the art and dignity of impartiality grounded in love, facts, positive affirmation and constructive criticism will be promoted and reinforced.
There are a myriad of varied interactions in this Tribe Architecture that’ll only increase, advance and exist in other forms and designs with age and usage.
Inter and intra-community conversations take place in public and private clans as we try to find and maintain balance in inclusivity and exclusivity of thought, though we are one and the same all together.
Members or institutions with knowledge or specialty in any particular field correlating to nature and the vast health sphere are verified and accredited, fostering integrity and accountability.
The fellowship and communication can extend beyond the aforementioned channels whereby there are communities whose thoughts and queries are only responded to by the respective community moderator/administrator(s). Or where the moderator is the first one to respond to a post before any other community member.
It is of the essence and absolute necessity we are open to, develop and adopt healthier living habits and knowledge fundamentally critical to our core existence, Nature and Nurture. It’s been proven throughout history that as humanity we are perceptive, receptive and adaptable and that’s through thorough constant repetitive learning, unlearning, relearning and sharing of information on the correlation, intersection and interdependence of all pillars of holistic health.
Welcome to YOUpersonify, your Holistic Health Resource Tribe, always striving to be Healthier, Together.